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