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They’re a hospital’s best kept secret. How patient advocates are changing health care in N.J.

  • Category: News
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  • Written By: Elizabeth Llorente|NJ Advance Media for NJ.com
They’re a hospital’s best kept secret. How patient advocates are changing health care in N.J.

Sarah Crespo, the director of patient experience at Saint Michael’s Medical Center in Newark, was featured in an article about patient experience on nj.com.

Read this article as it originally appeared on nj.com July 14, 2022. (You may need a subscription to access this article.)

Gigi Anders was trying not to panic.

The anesthesia hadn’t even worn off as she lie in a New York City hospital bed in May 2020, recovering from hip replacement surgery. She knew COVID-19 raged all around her, in the city, in the hospital.

And suddenly, she had a fever.

Anders twice tested negative for the coronavirus. But NYU Langone Orthopedic Hospital decided to move her to what a nurse called a “COVID ward” despite her objections, she said.

The Hackensack writer, fearing she would contract the virus there, felt frightened, vulnerable and very much alone. She had no relatives to advocate on her behalf as visitation was restricted at the peak of the crisis.

“I felt lousy. I was out of it from all the drugs and anesthesia,” Anders said. “My mother and friends were in quarantine, so I was on my own there.”

That was until she spoke with the patient experience specialist she had met during a 2018 stay at the hospital.

“She was horrified,” said Anders, 61, who showed NJ Advance Media emails she sent to the specialist during the ordeal. “We had a massively long conversation. She asked if I wanted to report it, have the surgeon endure a peer review. She took my complaints as seriously as if she’d experienced this nightmare herself.”

For Anders, the patient advocate was a port in the storm, giving her a personal cell phone number and email address, making her feel supported and offering to fight for her.

Patient experience specialists are a relatively new development in health care, found primarily in hospitals and long-term care and rehabilitation facilities.

They act as part advocate and part concierge, part liaison and part referee between patients and medical staff. Amid the imposing bureaucracy of hospitals and health systems, these staffers — at their best — can be almost fairy godmother-like in fixing problems, some former patients say.

The specialists, though hospital employees, enjoy a large degree of autonomy at facilities with strong patient experience programs, officials say. They can break through stonewalling, reach a doctor immediately, convince a supervisor to step in during a dispute and address concerns about care, pain management and medication.

They can also improve communication between patients — and their families — and overburdened doctors and nurses, especially as many hospitals face staffing shortages exacerbated by the pandemic.

“You want somebody who can tackle barriers,” said Cathy Bennett, president of the New Jersey Hospital Association. “That’s one of the things you want them to do. If they see things, whether it’s a roadblock or concerns, they should be able to put those on the table and be honest and real about them.”

Patient advocacy programs can range from one-person operations to a team of dozens of professionals. They represent eclectic backgrounds, from medical and social work to psychology, management and even Wall Street.

Some 70% of health care organizations reported having an executive devoted to overseeing patient advocacy services, according to the Journal of Patient Experience.

While little known, they are especially valuable for patients who have no family to advocate for them, for senior citizens who might need additional support and for anyone frightened, overwhelmed or medically unable to participate in their own care.

Advocates became especially indispensable during the COVID-19 pandemic, when many patients were too sick to interact with health care workers and visitors were restricted.

But hospitals decide whether these specialists are proactive or reactive, whether they prevent problems or merely provide damage control. Some facilities ensure that an advocate visits every patient. Others merely post a phone number for “patient experience” or “patient relations.”

“There’s a lot of variation in how it works in hospitals,” said Dr. Tejal Gandhi, the chief safety officer at Press Ganey, a health care experience analytics company. “In some organizations, the patient liaison may only come if they get a call with a complaint vs. other organizations where they’re more involved, reaching out at regular intervals to check in on people.”

Of course, these advocates are designed to protect hospitals as well as patients.

Uniquely positioned to defuse tensions, they are tasked with proactively warding off legal action and complaints to state boards as well as ensuring positive reviews.

The very existence of these advocates underscores the power patients wield with hospital surveys and internet reviews. Surveys from the Centers for Medicare and Medicaid Services play a critical role in determining how much a hospital is reimbursed for care by the federal government, and reviews help shape its reputation within the community, hospital officials say.

In fact, the advocate concept took hold more than a decade ago, when the CMS made patient experience one of five measurements used to rate hospitals.

For instance, Valley Hospital in Ridgewood received four stars in patient experience and four overall, as did Deborah Heart and Lung Center in Browns Mills. Robert Wood Johnson in New Brunswick earned two in both, and Hackensack Medical Center received two stars in patient experience and three overall.

The emergence of patient experience as a key performance indicator dovetailed with the rise of social media as a stage to alert others to good or bad service.

“The comments that people put on patient experience surveys or on social media are really important,” said Inspira Health CEO Amy Mansue. “Some people say, ‘I write these things on surveys, but I don’t really know if what I say matters.’ It does. ...

“I think weight has always been given to patient feedback, but especially now, with social media and the fact that so many of those [reviews] appear online and go into your profile as an institution or individual clinician.”

The job description
Hospital care is often life or death. Emotions can flare quickly among patients and their families.

The most effective patient liaison is both compassionate and discerning, according to Lynda McDonald, the supervisor of patient experience at CentraState Healthcare System.

“We see both sides,” said McDonald, whose team includes seven liaisons. “We know how things work, but we also look at things as the patients do.”

Patient advocacy demands a wide-ranging toolkit that includes patience, communication skills and the ability to de-escalate emotionally fraught situations.

“I’ve had so many patients come in and start off very angry,” McDonald said. “In one case, the family was very upset about the care of their loved one. It was that they didn’t understand the process, and when they got to me, they were yelling.”

McDonald said she formed a connection with the family, then arranged a meeting with the physician and others on staff.

“It changed the whole outcome,” she said. “When they left, they knew that they have someone who guided them and opened up doors.”

Inspira Health, a South Jersey-based system that includes three hospitals, has grown its patient experience team to 21 from 12 in just over a year.

“Their role is critical,” Mansue said.

Advocate certification and continuing education programs — such as the one offered by the non-profit Patient Experience Institute — have emerged, a sign of the field’s growth as a pivotal niche in health care.

Anders first encountered a patient experience specialist in 2018 at NYU Langone Orthopedic Hospital after a shoulder replacement. She found the very concept — a hospital employee advocating for patients — astonishing.

“I said, ‘What do you do?’” Anders said. “It was so strange. Then, before I was discharged, the patient experience woman came by to make sure everything was OK, and she gave me her phone number and email and said, ‘I’m here for you forever.’”

The specialist asked if she had any questions about the surgery, the medication she would receive and what to expect after discharge, Anders said.

The same patient advocate came to her rescue again in 2020, even if the situation sorted itself out without the specialist’s intervention. But even then she was a supportive pillar.

Anders was moved to the new hospital unit — despite testing negative for the coronavirus — where she was kept from 7 p.m. until 3 a.m., when her temperature dropped, she says.

NYU Langone told NJ Advance Media that it did not have a “COVID ward,” saying it placed Anders in a private room on another floor with an air filtration system designed for patients with the coronavirus or another infectious disease. The hospital says Anders was not in close proximity to anyone with COVID-19.

“Patient Experience is central to all that we do and we are continuously working to improve efforts to listen to our patients, understand their perspectives, and ensure that their needs are addressed,” NYU Langone said in a statement. “We constantly assess what we can do better and learn from the important patient feedback we receive — both good and bad.”

The patient experience specialist who helped Anders no longer works at NYU Langone, and NJ Advance Media was unable to reach her for comment.

Gandhi, a past president of the National Patient Safety Foundation, said it behooves a hospital to prioritize patient experience for moral and business reasons.

“If it helps patients, that helps hospitals,” she said. “You don’t want patients to have complications, extended lengths of stay, readmissions — all these things that actually impact you financially as well lead to low patient experience scores.”

Defusing tensions is also critical as mass shootings continue to rise nationwide and physical assault and verbal abuse of health care workers spike in New Jersey.

“Hospitals are worried about workplace violence,” Gandhi said.

Health systems also worry about money.

Strong CMS survey results and scores reverberate, said Sarah Crespo, the director of patient experience at Saint Michael’s Medical Center in Newark. “When you don’t reach the targets for the year, you lose money.”

A new urgency
The pandemic added a whole new element to the patient experience.

Hospital visitations were scaled back or suspended altogether. Doctors and nurses were deluged by an avalanche of critical patients and traumatized by the suffering they witnessed. And very sick patients were intubated and placed in medically induced comas with no one by their bedsides.

That left only the patient advocates to bridge the widening gaps.

The newfound urgency transformed the role.

“There’s been an evolution we’ve seen through COVID,” Mansue said. “Helping patients stay connected with families put patient experience at warp speed.

“We all understood previously the voice of the patients, but COVID took it to a whole other level.”

Patient advocates, along with medical staffers, have served as lifelines during surges. At the pandemic’s onset in 2020, “we became everyone’s families,” Crespo said.

“We were on the phone with the nursing unit head or doctor, and said, ‘You need to call them and keep them informed regularly so that their loved ones feel the patient is being taken care of,’” she said.

Part of the job continues to involve trouble shooting when things go amiss. But the days of merely responding to grievances appear numbered in many facilities, experts say.

“In the old days, the doctor spoke and you listened, but didn’t really ask questions,” said Bennett, the NJHA president.

But now everyone has a voice.

“The internet gives people that platform now,” Mansue said. “If you had a good experience or bad one, you tell everyone.”

At Hackensack Meridian Health, the pandemic inspired the creation this spring of Care Companion, an initiative that focuses on making families a more integral part of their loved ones’ care.

A patient who had dementia, for instance, wouldn’t eat unless a relative fed her. So advocates helped the relative and the nursing team work out a schedule — despite restricted visitation at the time — so the family member could feed the patient.

“The pandemic was very eye-opening to us about how important the family is for our patients’ healing journey,” said Rebecca Kaiser, the director of patient experience at the health system. “Families need to be empowered when they’re [dealing with] the hospital. They need to feel like they matter.

“The bottom line is that family members or that loved one is really the person who can support the patient in a different way than the medical team, because they know the patient much better than we ever will.”

After her experiences, Anders recommends anyone facing a hospital stay to find the contact information for that facility’s patient experience specialist or director.

She also advises sharing it with loved ones.

“They fix problems,” Anders said of the advocates. “That’s why they exist. Their whole raison d’être is to fix problems and make you happy. Eventually, we’re all going to be in a hospital, so it’s something everyone should know about.”