Tough Calls – Peter DePergola Brings the Art and Science of Ethics to Healthcare

“I was raised by a single mom, and when I was growing up, she worked in Baystate’s intensive care unit; she was the nurse manager there,” DePergola told HCN. “Often, after school, I would bring my homework to the hospital and do my homework there. I was 7, 8 years old, inside of a medical intensive care unit. I was surrounded by members of our community, and I remember feeling passionate about the difficult decisions being made — the impossible and emotionally devastating decisions.”

Adults understand, of course, that those decisions made from hospital beds run the gamut from underage pregnancies and abortion to end-of-life calls — some of the most complex, wrenching, and emotionally charged cases doctors face. But even as a child, he could sense the stress.

As he got older, DePergola said, he wondered, “wouldn’t it be a wonderful thing to provide support and decision-making models to help individuals, not necessarily to get through the process easier — no matter how prepared you are, it’s never easy — but to make better sense of a difficult process?”

Today, that’s the role he plays as a clinical ethicist at Baystate, where he feels just as home as he once did, but now aims to reduce the stress and anxiety of patients instead of just witnessing it. For his efforts, he was recently named one of BusinessWest magazine’s 40 Under Forty honorees. The program annually honors the most promising young professionals in Western Mass.

 “It’s a burden and a blessing to be invited into the most intimate corners of people’s lives — usually when they’re most vulnerable — and asked to deliver some sort of wisdom,” he said, adding quickly that the patient or family is always in charge. “Ethics is a recommending body, not a decision-making body. I help patients and families come to a decision they believe is best for them.”

The role was first identified in the 1970s, he noted, “so we really haven’t been thinking about ethics in medicine for that long, never mind having employees of hospitals and health systems do that full-time,” he noted.

Dr. Elliot Tapper, an internist at Beth Israel Deaconess Medical Center in Boston, wrote about the role of clinical ethicists in 2013, noting that they have “come to reflect both the increasing complexity of medicine’s ethical questions and our discomfort with the prospect of answering them alone.”

The practice of ethics consultation developed slowly at first, he noted, but by the late ’80s looked very much like it does today, and has grown in stature since.

“Despite the lack of clarity about fundamental aspects of this enterprise, ethics consultation flourishes,” Tapper writes. “More than anything, ethics consultation has come to best satisfy a central desire of American healthcare — sharing the responsibility for tough decisions.”

It’s a responsibility DePergola finds refreshing and rewarding.

“To some people, it might seem incredibly draining, that I should have nothing left at the end of the day,” he said, “but as much as I give to people, they recharge my battery as well.”

Not many hospitals employ a full-time ethicist, but DePergola thinks the role will become more common over  the next decade or so. His own job is multi-faceted, from speaking with families to training medical students in ethics to helping formulate hospital policy on various individual and public health issues.

“To explain my role as a clinical ethicist, I say I help patients and families, medical professionals, and hospital organizations navigate the different moral decisions surrounding life and death, and influence policy formation around life-and-death decision making,” he noted.

His role can be divided into four tiers, with the vast majority of his time — probably 65{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} to 70{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} — spent doing clinical ethics work, meeting with patients and families who are struggling with a decision. “They’re saying, ‘I’m not sure what to do for my loved one — how can I get to a place where I feel comfortable?’”

DePergola’s role is to make sure they understand the medical options and allow them to match up each possibility to their own personal values and come to a decision that makes the most sense for the patient and family. “I mediate, and I’m the linchpin between medical expertise and patient values. I try to bring the best of both worlds together and make recommendations for families and clinicians.”

His second role has to do with ethics education at Baystate. “We’re the western campus of Tufts School of Medicine,” he noted. “All our medical students, and many of our residents, need continuing ethics education, and I provide all that.”

DePergola’s third job involves institutional research review, particularly around studies involving human subjects. “They need to be overseen to make sure participants are participating freely and not being manipulated or coerced.”

The final part of his role involves organizational ethics and policy formation.

“We have a lot of broad-scope issues we deal with day in and day out,” he noted. “Take, for example, the recent ebola scare. We need to have a firm, concrete plan of action for how to treat patients. Where does the priority go when we can’t go everywhere at once. When we have scarce resources, who gets which resource, and what is the ethical justification for that?”

Another example is a fetus — past viability but still in need of advanced neonatal care — when a pregnancy is threatening the mother. “Clinicians have some really difficult decisions to make,” DePergola said.

“I review all our policies, not just public-health issues like pandemics, to make sure we stay up to date with current bioethics research,” he went on. “We’re often faced with patients demanding care that physicians think is not in the best interest. In those cases, what are the clinician’s rights? What are the patient’s rights? The family’s rights? By making policy, we’re making the pathways clearer to facilitate and mediate those conversations.”

DePergola cultivates his passion and skill outside Baystate’s walls as well, sometimes by speaking at area seminars, but most notably as a professor at Elms College, where he teaches nursing students about healthcare ethics, business and MBA students about international business and global ethics, and theology students about how ethics applies to religion.

“I’ve been trusted to teach a broad spectrum of things. I always joke with my students that I hold teaching spots in every major division at Elms — except for education, so I can’t promise I know what I’m doing,” he laughed.

Still, he noted that his broad background and degrees in philosophy, theology, and healthcare ethics enable him to show students “how the decisions we make contribute to the people we’re becoming — whether it’s becoming a better business professional or a better clinician.”

The role of the modern clinical ethicist emerged, in fact, from colleges and universities. By the late 1960s, Tapper writes, ethics committees were being formed in hospitals to address issues such as end-of-life decisions with the advent of the living will. But these bodies were often ineffective amid confusion over their role, authority, and expertise.

That’s when a small group of professional ethicists — typically academics trained in various disciplines — began to offer their services to healthcare providers. Partly as a result of their influence, by 1982, 73{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of medical schools offered formal ethics education, as opposed to 4{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} just a decade earlier.

 These days, DePergola is among a growing breed of specialists helping doctors, patients, and entire health systems navigate a minefield of ethical questions and bring peace to families.

Yet, despite the critical issues his patients face, he told HCN his job is a privilege that most people will never experience. “I’ve spent a lot of time with individuals who are facing the most difficult times of their lives. Many end up dying — maybe 50{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} end up dying, whether they’re newborns or teenagers or people who have lived a full life. I’ve spent a lot of time with dying people. But they’ve taught me about living and all the things that make life valuable and worth pursuing.”

In return, he helps patients and families take control of situations they might find uncontrollable. “The disease might have robbed them of the ability to write the story they wanted, but the ethicist sort of gives the pen back to its rightful owner, to make sense of the nonsense of disease and keep writing the story of their life.”

And that’s an immensely gratifying role, he added.

“I’m lucky to have extremely meaningful conversations all day long,” he said. “From the moment I arrive, I’m engaged in some of the most important decisions people can have. As difficult as it is, I always end up feeling richer than I did when I came in.”