Not everyone leaves the hospital feeling content about the quality of their care. At the University of Vermont Medical Center, dissatisfied patients have a place to go: the Office of Patient & Family Advocacy. But what happens once they’ve filed a complaint?

Last November, “some mental health issues” brought Evan Webster to UVMMC’s emergency department. Upon discharge, they wanted to stop at City Market in Burlington to pick up “some basic necessities” like water and toilet paper before taking an Uber back to their home in Charlotte.

But by Webster’s account, staff told them that this would present a conflict with hospital policy. “They’re like, ‘No, sorry, sorry, sorry, you have to go directly home,’” they remembered.

Instead, UVMMC would call a taxi to provide Webster with “direct passage” to their house and give them a voucher to pay for the ride. After “hours” of debate, Webster gave in.

“I get in the cab,” they recalled, “and then another person gets in the cab, who had just been released from the ED, was slurring his words, was talking about how his brother died in a car accident. And so we’re going to get in a joint cab, and we’re going to go to Winooski first.”

Webster called the experience “really scary” and “just totally contrary to everything they said.” They wound up exiting the cab and hailing an Uber after all.

Because the Uber couldn’t accept the hospital’s voucher, Webster paid out of pocket, hoping for later reimbursement. This – among other alleged issues that arose in November and then, again, in January, when Webster returned to the ED – led them to contact UVMMC’s Office of Patient and Family Advocacy.

According to the University of Vermont Health Network, UVMMC’s Office of Patient and Family Advocacy can step in when hospital services “fall short” of their goal “to provide the best care experience possible.”

“Our patient advocates look into and help resolve patient care-related complaints,” the official description continues. “We can also answer your questions about confidentiality and patient rights and can get you information about your care. Our experienced advocates are here to listen and to help.”

In general, a patient advocate may work for an independent patients’ rights organization or – as in the case of UVMMC –  for the healthcare provider itself. While the latter arrangement arguably carries an intrinsic conflict of loyalty, it also, at least in theory, offers easier access to information and internal channels for resolving problems and disputes promptly.

But how much power does Patient Advocacy really have at UVMMC? For patients who’ve used the service, it sometimes doesn’t seem like much.

Webster asserted that they’d experienced misgendering at the hospital. Indeed, they’d become aware of Patient Advocacy in the first place as a result of their call for “different help” in the midst of the incident, which prompted a staffer to hand over a business card with the office’s phone number on it. Webster immediately noted its limited hours of operation: Monday to Friday, from 9 a.m. to 5 p.m.

“I was like, are you serious?” they said. “If someone’s being abused or harmed… their only recourse is to leave a message with you and maybe wait, like, three actual days while this is going on?”

After the fact, Webster reached out – to no avail, they reported  – for a written apology, while encouraging Patient Advocacy to agitate for new personnel trainings to prevent misgendering in the future.

“They were kind of saying, like, ‘Oh, yeah, I hear you.’ That was kind of all they could do,” Webster lamented.

At the same time, Webster wanted “a better understanding about how medication works within [UVMMC’s] system.” During their November stay at the ED, they’d allegedly had to go without their normal prescription medications, which they’d left at home.

Upon returning to UVMMC in January, “I brought all the bottles with me. They were in my bag, which they had with my stuff somewhere else,” Webster said. When it came time for their nightly dose, medical staff “wouldn’t let me get my bag.” Another refusal followed in the morning.

Webster still doesn’t know for sure whether these denials contradicted UVMMC policy. Details about hospital procedures – such as when a psychiatric patient can or can’t leave the premises of their own free will, and whether patients are required to share taxi rides with other patients upon discharge – remained murky to them even after several email exchanges.

“I was asking for internal documents about some training stuff,” Webster said. “And they said that they can’t provide those, but they can act as a conduit, in the sense that they themselves could read it and then answer my questions. And they never did that with any kind of satisfaction of mine. So that was just an empty promise.”

Meanwhile, the $28 reimbursement request for the Uber ride appeared fully to exceed Patient Advocacy’s authority, escalating Webster’s case to UVMMC’s risk management program, “where they have an actual lawyer heading it,” Webster said. “If the hospital is going to disburse any money at all, it has to go through there.”

Still, the reimbursement never arrived.

“It is really frustrating, and I haven’t felt like I’ve been heard or that there’s been any kind of resolution,” Webster complained. A hospital official “would say, ‘Your care has been excellent.’ And she’d tell me what my own experience was when I was contacting her to bring up different concerns that I had.”

Laura Shanks works as a patient representative for Vermont Psychiatric Survivors, the civil rights advocacy organization that publishes Counterpoint. Normally, she covers Southern Vermont – particularly the Brattleboro Retreat – but occasionally she’s subbed in for a colleague in Northern Vermont, which has given her some familiarity with UVMMC as well.

According to Shanks, the Retreat doesn’t have an Office of Patient & Family Advocacy, but it has one employee who plays a comparable role. Even though the Retreat “has notoriously had a worse reputation” (as Shanks put it) than UVMMC overall, she has witnessed quicker and more effective responses to patient complaints at the former institution.

“Their patient advocate is significantly better getting back to me and meeting with individuals as needed at the Retreat and actually working on problem-solving or finding resolutions than what I came across with all the UVM incidents,” Shanks said. “This one person has done so much more than this whole department at UVM.”

Shanks recalled a situation in Brattleboro where a “person was having complaints around their doctor.” Although the patient advocate apparently couldn’t accommodate the request for a new physician, a meeting took place, and within “the next few days, the doctor made adjustments that this person was asking for in the way that they were communicating with them.”

“This person’s a lot happier with the situation,” Shanks reported.

On the other hand, in Shanks’s experience, UVMMC’s Office of Patient & Family Advocacy seems routinely to go “on vacation” for “literally two weeks or something. And then we’ll hear back.”

When a reply does arrive, it may not be pleasant. Shanks mentioned a patient “who may be contacting them too often, but they’re forwarding me pretty rude responses from the Office of Patient Advocacy.”

In Shanks’s telling, communications from UVMMC’s patient advocate have, at best, a perfunctory or lawyerly quality: “It seems every response we’ve had for any grievance or complaint put in has shuffled around it without actually touching on it, if that makes sense.”

Brandon, an Essex Junction resident who requested that Counterpoint withhold his last name for privacy, described speaking on the phone with the Office of Patient & Family Advocacy following an inpatient stay at UVMMC’s psychiatric unit over Memorial Day weekend. The conversation itself didn’t go badly.

“I got a hold of someone and was like, ‘I want to file a complaint.’ And they listened to my story. They were really sweet and kind of apologetic – like, not an actual apology, of course, but like, ‘Oh, I’m so sorry that you’re upset,’ basically. But they took all the information down, and they were like, ‘We will pass this along,’” Brandon recounted.

Brandon, who has a diagnosis of obsessive-compulsive disorder, had found himself “spiraling” last spring amid what he termed an addiction to alcohol and cocaine. He arrived at UVMMC on the advice of his psychiatrist and, in the ED, had “an incredible experience,” where “everyone was super respectful to me.”

“An ED resident came and talked to me, and basically, they were explaining the options. I expressed a preference for what is called an IOP, an intensive outpatient program, like the one run by UVM, which is called Seneca.”

By this point, though, it was “like 2 a.m. I’ve been there forever, I’m exhausted, I’m coming down off of all these substances, and I just want to crash. And they were like, ‘Let us take you inpatient overnight. You’ll go to a quiet place. You’ll be able to get some sleep.’”

By his account, Brandon complied happily. But in the inpatient psych unit, on Shepardson 3, he wasn’t as lucky.

With most of UVMMC’s doctors out of town for the holiday, a covering psychiatrist from Plattsburgh initially offered him what he’d wanted: a prescription for an antipsychotic and a referral to services at the Seneca Center, which he would use alongside continuing sessions with his own psychiatrist. Brandon was ready to go. But then the covering psychiatrist went home, and a psychiatric resident took charge.

“The psych resident comes into my room with the med student and says, ‘So I hear you’re asking about discharge,’” Brandon recalled. “And I was like, ‘Yeah, I would like to do an IOP. I would like to do the three things we talked about, starting now.’

“He told me, ‘Based on what I understand about you, if I let you go, you are going to kill yourself.’ And I was like, ‘Dude, I’m totally not. Were you not listening to anything that I said?’ The whole thing is that I have obsessive-compulsive disorder: I never had the intention to kill myself, but I have these obsessive thoughts that come with a fear of intention. And it’s this whole thing, but I never actually wanted to kill myself, and I made that very clear on every chance possible.”

According to Brandon, the resident didn’t seem to hear him.

“He was like, ‘Here’s the deal: if you want to be discharged, we are going to have to pursue an involuntary hold.’” It would likely last seven days.

The threat struck Brandon as “an absurd escalation,” and he went into “full-blown panic mode.” Ultimately, his wife found “someone that looks important” and “raised hell” on his behalf, “until, basically, they agreed to give me a discharge against medical advice.”

The discharge let Brandon go home, but it canceled his prescription and his referral.

Since then, sobriety has been hard. “I’ve got my support network that’s holding me together, but I am not receiving any form of institutional support,” Brandon said.

Four weeks after filing a complaint against the psychiatric resident by phone, Brandon received a follow-up email from the Office of Patient & Family Advocacy, stating that it had forwarded his complaint to the resident’s “leadership committee,” as he recalled it.

“And then they were like, ‘However, everything after this is personnel records, so we’re not privy to those details.’ So, basically: ‘We told them about it, but we’re not allowed to know if anything’s actually happening.’”

Disciplinary measures for the resident seemed unlikely, but Brandon still wanted to receive services at the Seneca Center. Patient Advocacy didn’t offer to help him get the referral reinstated.

“I assumed that acting through the Office of Patient Advocacy would be my route, and all they did was listen to my story,” Brandon said.

“At the very least,” he’d hoped for “maybe a call from someone on the leadership committee being like, ‘Hey, I heard about this,’ and either, ‘I want your side of the story,’ or ‘It wasn’t cool.’ The problem is that I don’t know what my medical documentation says. So maybe the story that they’re seeing is totally different.”

VPS’s new patient representative for Northern Vermont, Kat Parker, previously worked at UVMMC as a licensed nursing assistant and as a medical assistant.

“Even to a lot of staff, they’re not sure what patient advocacy really does there. To me, it was sort of this impression of, like, this pacifier to make patients shut up,” Parker said. “That’s what a lot of the nurses kind of used it as: ‘OK, you put in your complaint. Cool. Bye.’”

Even so, Parker wouldn’t try to dissuade patients from using the service.

“It’s definitely still the first step. I would encourage my peers to put it in writing, save a copy, date it, keep track of time and everything, and then just be a squeaky cog about it. Call in every two to three weeks and be like, ‘Hey, I just want to see where we are on the progress of “blank” grievance,’” she said.

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