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Healthcare Heroes

She’s Forging Pathways to Help People Overcome OCD and Hoarding Disorder

Tara Ferrante

To illustrate one of the many ways obsessive-compulsive disorder, or OCD, can manifest itself, Tara Ferrante said everyone has stood at a rail atop a high building, looked down, and thought, what if I jumped? It’s a little scary, and basically harmless.

“But with OCD,” she continued, “you actually evaluate that thought and think it could happen, and then, ‘I must be a terrible person to have that thought.’ Or it creates anxiety because that thought means something, and you have to do something to feel better.”

OCD often begins as an intrusive thought, she explained, and everyone has intrusive thoughts. What sets OCD sufferers apart, though, is their response to those thoughts. “Sometimes it’s a compulsion, sometimes avoidance — ‘I can’t be in tall places,’ or ‘I can’t be around knives, because I imagined myself stabbing someone once, so I must be a dangerous person. What person must think something like that? I must be a horrible person. People shouldn’t be around me.’”

But while avoidance — or whatever compulsive, repetitive action helps to mitigate that intrusive thought — might bring temporary relief, it also reinforces the initial evaluation of that thought, she went on, “so the next time that thought comes up, you’re stuck in that same cycle where you have to do something to feel better.”

Then there’s the behavior known as hoarding, which buries people, both psychologically and literally, in their own possessions because they’re unable to get rid of anything — presenting a wide variety of dangers.

“It can be a fire risk, or it can be a fall risk, especially as people get older, or someone may have other health issues and the path’s not wide enough for a gurney to get into their house for emergency support,” Ferrante said.

“It also causes people to isolate more — they’re afraid to have people in the home, or to reach out to people,” she went on. “There’s a thing called clutter blindness, where they might not see all the clutter, but when another person is there, it’s striking. There’s the shame and the guilt and everything else that comes up around that, so a lot of people do isolate more because of the clutter.”

Ferrante is program director of the Holyoke Outpatient Clinic at ServiceNet, one of the region’s largest behavioral-health agencies, and treats patients with a wide range of behavioral-health conditions. But it’s her work leading ServiceNet’s OCD and Hoarding Disorder Program that earned her recognition as a Healthcare Hero in the category of Emerging Leader.

To be sure, Ferrante doesn’t see herself as a hero — just someone passionate about helping people overcome behaviors that range, depending on the patient, from mildly annoying to completely debilitating.

“It feels so good to see people thriving in their lives who wanted to die at points,” she told BusinessWest. “While their lives may not be perfect by any means, they’re able to live their lives the way they want to, with much more ease.”

Starting the Journey

Ferrante’s journey in this specialized field began while working with a client who was experiencing extreme distress from OCD symptoms. She had read about emerging OCD treatments, learning that the most effective approach seemed to include a mix of structured clinical treatment and home-based and peer support.

So, two years ago, when ServiceNet’s senior leadership proposed the launch of an OCD program in Western Mass., she jumped at the opportunity to lead the program.

“They saw this area as a kind of desert in terms of people who can really specialize and are able to provide good care to people with OCD and hoarding disorder,” she explained. “I was super interested, and I expressed interest in overseeing it.”

“It feels so good to see people thriving in their lives who wanted to die at points. While their lives may not be perfect by any means, they’re able to live their lives the way they want to, with much more ease.”

Before launching the program, Ferrante and fellow clinicians first completed four days of training in OCD and hoarding disorder, then conducted a series of consultations with two nationally recognized experts on these conditions: Dr. Randy Frost, a professor of Psychology at Smith College, and Denise Egan Stack, a behavioral therapist who launched the OCD Institute at McLean Hospital in Belmont, a Boston suburb.

“We’ve been so lucky,” Ferrante said. “People have invested so much time and energy in our program to get it off the ground and get it going and helping me as a leader. It’s been really great.”

Currently, six ServiceNet clinicians provide specialized OCD and hoarding-disorder treatment at the agency’s Holyoke, Greenfield, and Northampton clinics. The program’s model continues to evolve, but several facets have crystalized, including the use of Smith College students as interns in the program. Frost trains the students for adjunct work in the community, such as conducting ‘exposures’ with clients battling OCD, Ferrante explained.

“They’ll give emotional support to people [with hoarding disorder] as they are sorting and discarding, or as they go out and practice non-acquiring — going to a store where they like buying things, and then not getting anything, sort of building up the tolerance of resisting that urge.”

Tara Ferrante says people with OCD and hoarding disorder span all ages and demographics.

The student collaboration has been valuable and productive, she noted. “We’re limited in how much we can get out into the community or into the home between sessions. The introduction of the interns has helped create steady progress.”

The term ‘hoarder’ is actually out of fashion, she noted, having taken on a stigma in recent years, thanks partly to TV shows that often vilify those who struggle with the condition. Frost has written extensively about the reasons people hoard; some call themselves ‘collectors’ or ‘finders-keepers’ because they see value in every item in their cluttered homes.

“That’s a strength, to be able to see value where other people don’t, or to see beauty where other people don’t,” Ferrante said. “But it’s a strength that’s gone too far, and that can make a hindrance in being able to get rid of things. Also, people don’t want to be wasteful, they don’t want things to go into landfills, and again, that’s really a wonderful quality — but it then impedes their quality of life.”

Hoarding is also a form of perfectionism, at least in the eyes of collectors, she went on. “You want to use something to its full ability, or it needs to go to the just right place. Or, if it’s going to be given away, it needs to be given to just the right person who’s going to love it fully, and if you can’t find that person, then you’re just going to keep it, and that can stall progress sometimes.”

As for OCD, like many mental-health conditions, it can differ in severity from one person to another, Ferrante said.

“Sometimes people can function pretty well, but even for those people who aren’t seeking treatment, it can affect their ability to have relationships, to get to work on time, even to leave their house,” she explained. “There are so many ways it can make people’s lives difficult. And even if they can function sometimes, they’re living in this constant state of anxiety and panic, which is really unpleasant.”

Then there are the more severe cases — stories of people unable to touch their children or their partners for years, or unable to leave their home, hold a job, or participate in life in any way.

The standard treatment in Ferrante’s program is known as exposure and response prevention, a form of cognitive behavior therapy.

“We form a relationship and create situations where they get exposed to the anxiety, the intrusive thought, and we don’t do the compulsion,” she explained. “We do it in a supported way at first, in session, and then we have the interns who can do that out in the community, and eventually we want people to do it on their own. We make exposure part of life — this idea of, ‘let’s turn toward anxiety rather than away from anxiety.’ It takes the power out of it, and they’re able to really start living their lives the way they want to be living.”

Many patients are treated with a combination of therapy and medications, often anti-depressants. “But not everyone needs meds,” she said. “I see a lot of positive outcomes with just exposure and response prevention on its own.”

Breaking Through

The ServiceNet program runs a series of support groups called Buried in Treasures, named after a book Frost co-authored. Ferrante also sits on the board of the Western Massachusetts Hoarding Disorder Resource Network, which puts on conferences that focus on what resources are available in the community for those who struggle with the condition. ServiceNet also brings in experts for lectures where mental-health professionals can earn CEUs for learning more about hoarding and OCD.

All this training is aimed at broadening resources for a patient population that cuts across all socioeconomic barriers and cultures around the world. Hoarding, in particular, is often seen as an older person’s condition, but that may be because they’ve had more time to accumulate, so the signs are more readily apparent.

Progress in overcoming a compulsion to hoard can be slow, Ferrante added. “That stuff didn’t get in the home overnight, and it’s not going to get out overnight. I mean, it can get out of the house overnight, but that generally is going to make things worse — it creates a trauma, it makes the person treatment-resistant, and doesn’t actually address how it all happened.

“It’s almost a guarantee, if someone has a forced cleanup, they’re going to fill their space up again,” she went on. “So we take a slower approach that looks at what got someone there and creates the skills they need to declutter on their own, and not have it return.”

While people who hoard often struggle with stigma, OCD sufferers are plagued with the opposite: the many Americans who think they have OCD because they have certain routines, and proclaim it with an odd sense of pride.

“They say, ‘oh, I’m so OCD,’ and it really minimizes it for people who are suffering,” Ferrante explained. “It’s not just being really clean or wanting things in a certain order. If those things are torturing you and you can’t function, sure, but people can have certain obsessions or compulsions and not have OCD. The ‘D’ part of OCD is that it’s impairing your ability to function, and most people who say, ‘I’m a little OCD’ … well, they’re not.”

On the other hand, it’s also frustrating for someone with OCD to be misdiagnosed, she added.

“I get calls from people saying, ‘I’ve been looking for help forever; no one knows what I’m talking about.’ Sometimes, when people think they’re dangerous because of an intrusive thought, then a therapist buys into that because they’re not sure what this is, and it reinforces that belief. But even suicidal thoughts can be OCD. People can get hospitalized when that’s not the right intervention. You want an expert making sure you’re making the right call there.”

Outside of her OCD and hoarding work, Ferrante continues to manage all the clinicians at the Holyoke clinic, and handles a caseload of about 15 patients at a time, dealing with a wide range of mental-health concerns, from substance-use disorders to trauma, anxiety, and depression. In that sense, she and her team were already doing heroic work before launching the OCD and Hoarding Disorder Program.

But since that launch, she’s been able to help a patient population that often finds it difficult to access resources — and wind up suffering in silence, and often falling prey to other conditions; in fact people who hoard are 80% more likely than the general population to develop depression.

“It’s amazing to see people get better,” she told BusinessWest, whether progress occurs quickly or not. “It’s not always simple — sometimes there’s more than just OCD going on, and it’s more complicated. But if people are coming in, they’re already motivated to do the work, and progress can be pretty quick.”

She thinks of the client who inspired her interest in OCD research, and said “it blows my mind” how far he’s come.

“It’s so, so great when people graduate and don’t need therapy anymore. To see even small progress — people being able to do things they couldn’t do before — makes my job totally worth it.”

Joseph Bednar can be reached at [email protected]

Healthcare Heroes

In the Emerging Field of Bioethics, He’s a Leader and a Pioneer

Peter A. DePergola II

Peter A. DePergola II

Oddly, he doesn’t actually remember where or when he got it.

But Peter DePergola’s copy of Rembrandt’s renowned The Return of the Prodigal Son looms large in his small office (it takes up most of the back wall) and, far more importantly, in his life and his work.

The painting, as most know, depicts the moment in the Biblical parable when the prodigal son returns to his father after wasting his inheritance and falling into poverty and despair. He kneels before his father in repentance, wishing for forgiveness and a renewed place in the family.

DePergola, director of Clinical Ethics at Baystate Health, the first person to wear a name badge with that title on it and the only clinical bioethicist in the region, says the painting — and the story of the prodigal son — provides a constant reminder of the importance of not judging others and providing them with what they need, not what they deserve. And that serves him very well in his work.

“The story is about sins and forgiveness, but what it teaches me about healthcare is that we should never treat our patients based on what we think they deserve morally, but on what they need, and only what they need,” he explained. “We don’t get to say, ‘you’re a murderer,’ or ‘you’re an adulterer,’ or ‘you’re an alcoholic — if you really wanted to stop, you can.’

“We have to meet them in the middle of their chaos, to sort of run out to them,” he went on, “and to treat them based on what they need and who they are, not on what we think they deserve.”

“It’s not that they don’t understand that medicine has its limits — I think they do. But they’re living in this larger narrative of ‘who am I if I don’t do everything I can for the person I love most?’”

‘Meeting them in the middle of their chaos’ very often translates into a time when decisions have to be made — difficult decisions — about what can be done for a patient and what should be done; about what is proper and what is needed (there’s that word again).

“There are plenty of things we can do, but shouldn’t,” he went on, adding that such dilemmas are becoming ever more common as the population ages and modern science finds new and different ways to extend life.

The issue he confronts most often involves what kind of life is being extended — and whether that kind of life should be extended. And within that broad universe there are countless other matters to consider, discuss, and debate — and they involve everything from raw science to individuals’ base emotions and perceptions about what is right, wrong, and proper.

“Family members will say, ‘I know this isn’t going well, but am I a loving daughter if I say this is the end? How do I think through this?’” he told BusinessWest as he recounted the type of conversation he has most often. “It’s not that they don’t understand that medicine has its limits — I think they do. But they’re living in this larger narrative of ‘who am I if I don’t do everything I can for the person I love most?’”

Overall, his work in the broad realm of bioethics involves everything from these end-of-life issues to the use of animals in research to potential conflicts of interest and conflicts of commitment. DePergola summed it all up in intriguing fashion by saying “no one ever calls me when something good is happening.”

Despite this, and despite the difficulty of his work — not to mention the long hours and often unusual hours; he was recently called to Baystate at 1 a.m. — DePergola finds it rewarding on many levels.

He likes to say he helps people make sense of nonsense and not necessarily answer questions that can’t be answered, but enable people to cope with them.

“People will say, ‘I’ve lived a good life, and I’ve always done the right thing, and here I am, with six months to live. Why must I suffer? Why do I have to be in pain? Why do I have to be in the hospital?’” he noted. “And at the end of the day, I’d say, ‘I don’t know, it’s not fair, I don’t understand. But let’s not understand together.’

“You don’t have to go through not knowing alone,” he went on, hitting upon the best answer to the question of why his role now exists. “And that may be the only antidote to that question; I can’t tell them why bad things happen to good people, but I can be there with them when they’re asking that question and looking for answers and looking for compassion.”

For his multi-faceted efforts — many if not all of which fall into the category of pioneering — DePergola has, well, emerged, into not just a leader in his field, but a Healthcare Hero.

Work That Suits Him

There’s a white lab coat hanging on a hook just inside the door to DePergola’s office, and it’s there for a reason.

While not a medical doctor, DePergola is a member of a clinical team that interacts with patients and their families. The white coat isn’t required attire, and he didn’t wear it earlier on his career. But he does now, and the explanation as to why speaks volumes about the passion he brings to this unique job every day.

“When I used to come dressed in a suit to have these very important conversations with patients and families, I think it was intimidating in a way,” he explained. “I did it out of respect … you’re going to have the most intimate conversation a family’s ever had — what would you wear to that? You’d want to wear something that says, ‘I really care about this. and I care about you.’

“But it looked like I was a lawyer, and people couldn’t get past the outward appearance,” he went on. “Sometimes just a shirt and tie is too casual, but the combination of the lab coat and the tie seems to send the right message.”

There are other examples of this depth of his passion for this work, including his desire to understand the role religion plays in making those hard decisions described earlier.

“I knew that what I was getting into had a lot of value implications,” he explained, “and that the primary pathway into those values was religious commitments. So I got a master’s degree in theological bioethics so I could make sure that I understood what Hindus and Buddhists believed about end-of-life care the same as Orthodox Jews and Catholics, and what Muslims thought about autopsy, so I could meet them not just where they are clinically, but where they are biographically and in their values.”

As he talked about his career and what he was getting into, DePergola stated what must be considered the obvious — that he didn’t set out to be a bioethicist. That’s because this field hasn’t been around for very long — only since the early ’80s, by his estimates — and it’s especially new in the Western Mass. region. In essence, and to paraphrase many working in healthcare, the field chose him.

“Larger American cities — New York, Boston, Los Angeles — have had full-time clinical bioethicists since probably the end of the 1980s,” he explained, adding, again, that he’s the first in the 413. And in many respects, he helped create the position he’s in and write the lengthy job description.

To fully explain, we need to back up a bit.

After earning his bachelor’s degree in philosophy and religious studies at Elms College (early on, he thought he might join he priesthood, but settled on a different path), and then a master’s degree in ethics at Boston University and his Ph.D. in healthcare ethics at Duquesne University, DePergola completed a residency in neuroethics at University of Pittsburgh Medical School and then a fellowship in neuropsychiatric ethics at Baystate, then the western campus of Tufts Medical School, in 2016.

“The patient is always the priority. In risk management, it’s the hospital first, then the patient. With me, it’s the exact opposite; I make sure everyone’s voice is heard.”

While completing that fellowship, he took on some duties in the broad realm of research ethics, a large subset of this emerging field, but this work was eventually expanded into a new leadership position at Baystate — director of Clinical Ethics, a role he said he helped create in partnership with the health system.

“I did a lot of convincing, and I sort of sold the problem,” he said.

“Medicine tells us what we’re able to, and the law tells us what we’re allowed to do. But neither one tells us what’s good to do. And how we navigate the mean between extremes? If we did everything possible for our patients, we’d be deficient, and there are plenty of things we could do without breaking any laws, but that wouldn’t be in itself good for patients. So we needed someone to step into a leadership role.”

In creating the position and its job description, he and members of Baystate’s leadership team borrowed from models already in existence at similarly sized healthcare systems, especially those at Maine Health, the Carolinas Health System, and the Henry Ford Health System.

DePergola said there are four main categories, or pillars, to his work: clinical ethics, research ethics, organizational ethics, and academic ethics, or ethics education.

The primary domain, as one might expect, is clinical ethics, and in that role, he meets with patients, family members, and healthcare professionals “as they navigate the moral terrain of life-and-death decision making at the beginning, middle, and end of life,” he explained.

“I see everyone — from patients and their families in the Neonatal Intensive Care Unit to our geriatric patients, to everyone in between, whether it’s a patient in infectious diseases or genetics or ob/gyn.

And, as he said, no ever calls him when anything good is going on.

Questions and Answers

As he talked about his work in bioethics and many of the difficult conversations he becomes part of, DePergola summoned a quote from Aristotle that he’s undoubtedly already used countless times in his short career.

“He said, in essence, that something is good if its fulfills the purpose for which it was made, and bad if it doesn’t,” said DePergola, adding that such a benchmark, if one chooses to call it that, should be applied to all aspects of healthcare, including everything from a feeding tube to any other step that might be taken in an effort to prolong life.

“If it’s not going to fulfill the purpose, is it good? We need to think about the logic of what it would mean to provide a clinical treatment without a clinical reason,” he went on, adding that such questions loom large in his field of work and often bring him to another difficult discussion — the one juxtaposing quantity of life against quality of life.

Such thought patterns help DePergola as he goes about his various duties, during which — and he makes this point abundantly clear — he advocates for the patient first, not the health system that employs him.

And this distinguishes his work from that of those in the broad realm of risk management.

“The patient is always the priority,” he explained. “In risk management, it’s the hospital first, then the patient. With me, it’s the exact opposite; I make sure everyone’s voice is heard.”

And not only heard, but understood, he went on, adding that the cornerstone of success in this field (if one can even use that word within it) is establishing trust.

Wearing a white coat instead of a suit coat is part of it, but a bigger part is understanding exactly where someone is coming from. And this comes from taking the time to understand their situation, their religious beliefs, and much more.

Even then, the decisions don’t come easy, he went on, adding that his work often comes down to helping parties decide between the better of two bad options and coping with questions that, as he noted, can’t really be answered.

Such sentiments are reflected in DePergola’s thoughts on other aspects of his work, especially his teaching — he’s an assistant professor of Medical Humanics at Elms College, where, in the small-world department, had Erin Daley, director of the Emergency Department at Mercy Medical Center and the first Healthcare Hero in the Emerging Leader category, as one of his students.

“I always try to emphasize to my students that the big questions of medicine that patients are asking have little to do with medicine, that the big problems in medicine have little to do with medicine,” he told BusinessWest. “They’re questions of meaning, purpose, identity, and value.

“They don’t show up on X-rays, you can’t write prescriptions for them, and we can’t bill for that,” he went on. “Medicine is very good at addressing ‘how’ questions — as in ‘how does ammonia work?’ — but it’s very poor at addressing the ‘why’ questions. And I think that, when we fail to connect with our patients in medicine, it’s because we’re giving ‘how’ answers to ‘why’ questions.”

Framing the Question

Returning to Rembrandt’s Return of the Prodigal Son, DePergola said there’s another reason why that painting resonates with him.

It has to do with how many times he has the same conversations with different people, such as the one about miracles, and walking them through the argument that there’s no logical connection between believing in a miracle and concluding that life-sustaining medical treatment should continue.

“You don’t offer life-sustaining medical treatment for miracles to occur, and I often dread having another one of these conversations,” he said. “But then, I remember that every time I have any of these conversations, it might be the 12th one of the day, but it’s the first for these families. They deserve for me to treat it as the most important and the only conversation, not the 12th.

“Again, I give them what they need,” DePergola went on, expressing sentiments that clearly explain why he’s an emerging leader, a pioneer, and a Healthcare Hero.

George O’Brien can be reached at [email protected]

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