Interview with Kayhan Parsi and Nanette Elster: the John B. Francis Co-Chairs in Bioethics

 

 

Since joining the Center this fall, Professors Kayhan Parsi, JD, PhD, HEC-C, and Nanette Elster, JD, MPH, have begun shaping programming that bridges scholarship and practice. In a joint Q&A, they talk about their backgrounds, their approach to ethical reasoning, why they joined the Center for Practical Bioethics, and what excites them most about supported decision-making, disability ethics, and the future of bioethics education.

BEGINNINGS AND INFLUENCES

Please share a little about your backgrounds.

Kayhan – I was born in Ohio, the oldest of four boys, and spent my early years in New York and New Jersey. My parents moved to East Texas in the mid-1970s when I was 10. Both parents were healthcare professionals and were big influences on my career choices. My father was an OB/GYN and my mother an OB nurse and midwife. Early on, I considered journalism and even a filmmaking career but finally decided to go to law school.

Nanette – My early childhood was in Gary, Indiana. When I was 8, my family moved to the northern suburbs of Chicago. I thought I would become a social worker or writer. I particularly loved stories that elevated the voices of those who may not have a voice or be heard. I majored in English with a minor in psychology. Similar to Kayhan, my parents were major influences on my career. My father was a feminist who wanted me to be able to support myself and encouraged me to go to law school.

How did you find your way into bioethics?

Nanette – During my early legal career, I assisted a judge doing research on the ethics of human subjects. I was toying with a master’s in law when, as part of that research, I met Leonard Glantz, an esteemed professor in the Boston University School of Public Health who was working on a book about the unethical research on human subjects during the Holocaust. Leonard convinced me that I already knew how to think like a lawyer and should consider a Master of Public Health (MPH).

I’d never heard of an MPH at the time. There wasn’t a proliferation of programs like there are now. Harvard has a great program but focused on epidemiology and biostatics. The MPH program at BU really appealed to me. When I started, they knew about my interest in research ethics and put me in touch with health law/health policy folks like George Annas, Wendy Mariner, Mike Grodin, and Leonard Glantz. I did background research for Leonard and George on the first draft of the Genetic Information Non-Discrimination Act (GINA). I took coursework in bioethics and ethics consultation and found my passion.

Kayhan – My bioethics journey was similar in some ways, but I think the seeds were planted much earlier. I took a couple of bioethics courses from Tris Engelhardt when I was an undergraduate at Rice in the mid-80s. I found the courses fascinating. My interest in bioethics was re-ignited when I took a course on law and bioethics in my third year of law school. It was taught by Bill Winslade, who encouraged me to apply to the PhD program in medical humanities at the University of Texas Medical Branch at Galveston. It was an amazing multidisciplinary program that suited my intellectual interests to a T. That experience paved the way for my career as an academic bioethicist.

 How do your legal and public health backgrounds shape your approach to ethical reasoning?

Nanette – The thing that troubled me in law school was it was so theoretical. When we enact laws, we rarely go back and look at how they’re working. Did they accomplish what they were supposed to do? What are the unintended consequences? But in public health, you are constantly evaluating and adjusting to determine if your intervention achieved its goal. Public health is proactive; the law is reactive. But they need each other to make things happen. I’ve always tried to merge those two things to improve health and wellbeing as opposed to being adversarial and punitive, which is how most people view the law.

Kayhan – My legal background has informed my approach to ethical reasoning. I took a logic of the law course that was invaluable in developing my reasoning skills. I was also influenced by Bill Winslade who took a very pragmatic approach to clinical ethics. I learned that the law plays a role in clinical ethics but is not the last word.

Since my PhD is in medical humanities, I take a broad-based humanities approach to a lot of the issues that we study. So, for instance, when I teach a course on justice and healthcare, we don’t just look at theories of justice. We look at the history behind the system that we’ve inherited. None of the issues we’re facing today are ahistorical. They all have a deep historical narrative behind them. I also try to impart this with my students in a history of bioethics course I teach.

I also teach a course on narrative ethics and use the work of a variety of scholars in narrative medicine and narrative ethics.

Please tell us more about the importance of narrative.

Kayhan – Narrative is how we make sense of the world as human beings. It’s how we make meaning in our lives. And it can take many different forms…a memoir, play, movie, short story. I think it’s especially important for people who work in healthcare to develop narrative competence. This kind of competence allows us to better understand the stories we tell each other and ourselves and how we make sense of life, sickness, suffering and death.

What are your thoughts about “practical bioethics?”

Nanette – One thing that’s interesting about public health is that we’re often looking at groups, not individuals. Practical bioethics allows me to explore how the group affects the individual. We can apply different ethical theories to the same problem and maybe come up with different outcomes, all of which would be ethical and appropriate. But to me it’s about listening to the patient and how these approaches impact them directly. It’s funneling down to the individual level and what it means and how it can translate back into policy.

AREAS OF FOCUS

So, Kayhan, you’ve led a successful graduate bioethics program at Loyola for 25 years. You’re the immediate past president of the American Society for Bioethics and Humanities. You played a major role in advancing the society’s certification of clinical ethics consultants. And you’ve consulted on dozens of cases, particularly involving end-of-life issues. Where are your interests and work currently focused?

Kayhan – Certainly I want to continue to focus on the work we’ve been doing in neurodiversity, autism, disability, and supported decision-making. We co-teach a course in disability health for our medical students which has been very well received.

I also want to see our field further professionalize. I think it’s very important to keep up the momentum to increase awareness of certification and what it can offer to patients, families and clinicians. Also, as ethicists, I feel we should be competent in not only addressing issues that are of concern to our clinical colleagues and patients, but also to do public-facing bioethics. Because bioethics touches everyone’s lives at some level.

Nanette, you have extensive experience in legal, public health and ethical issues related to women’s and children’s health, genetics and neurodiversity. You’ve also done work for the American Dental Association and the American College of Dentists related to ethics and professional responsibilities. Where are your interests and work currently focused?

Nanette – A lot of what I do is interconnected. For instance, public health and oral health are critically related, but also connected to pediatric health, women’s health, reproductive health and disability. Right now, my area of concentration is pregnancy, infertility and menopause with a focus on neurodivergent women as well on meeting the overall needs of autistic adults. Like Kayhan, I like to move beyond academic talks and presentations and into the community. The community engagement piece is critical. I want to hear from those we’re talking about and elevate their voices in ways that matter. Without doing that, we’re too far removed to make our work effective.

Together you’ve written several articles, co-edited a book and presented at conference on ethical issues related to transitioning autistic and neurodivergent adolescents into adulthood. What are the key issues that concern you?

Nanette – We’re in the early stages of exploring the concept of supported decision-making and legislation that is helping to define it. For many who are neurodivergent or have intellectual disabilities, we automatically turn to someone else to make decisions about their lives, often a guardian or conservator. We impede autonomy without recognizing that decision-making abilities might wax and wane. We want to support individuals to have a sense of control and dignity regarding their day-to-day lives, as well as important life decisions such as those related to healthcare. This relates to bioethics because it supports human dignity.

I’m particularly interested in women and neurodivergence. Many women aren’t diagnosed until later in life, and there are many areas like reproduction, parenting, pregnancy, menopause and infertility, where neurodivergence may be an issue and where support could be critical. Additionally, being diagnosed later in life means that supports have been limited and many women may have been masking or misdiagnosed.

We’re also interested in neurodivergent providers and what support they get. The research suggests that a neurodivergent person communicating with another neurodivergent person is more effective. This could translate into the clinical experience allowing neurodivergent providers to better communicate with neurodivergent patients, thus offering care that better aligns with the patient’s goals and values.

Kayhan – We have begun analyzing state laws that exist on supported decision-making (SDM), and we plan to then translate that information into educational programming for clinicians, ethicists, patients and families. There exists an educational gap with this new set of laws and legislation.

Nanette – We want to find out if these laws are doing what they’re supposed to do. SDM is a relatively new trend. When we started this work five or six years ago, there were only about five states that had laws. Now there are about 22. But they’re not all the same. For example, do they just pertain to healthcare decisions? What sort of safety mechanisms are in place to ensure that the supporter isn’t taking advantage of the supportee?

What is the goal of supported decision-making?

Kayhan – There’s this whole area of situations where people may have some decision-making capacity but just need some additional support. The goal is to formalize that process and offer another tool for individuals to make healthcare decisions.

Nanette – Awareness of the concept is still quite low. I was in a meeting where we were discussing an adolescent over the age of 18 who had some mental health issues, so capacity would wax and wane. I sent a message to a clinician colleague asking if a supported decision-making agreement was in place. The clinician was not aware of SDM. And I thought, wow, this is an area where a supported decision-maker could be so helpful.

You treat students as future colleagues. How and why?

Kayhan – For both of us, mentorship is certainly one of the most important things that we do as faculty and academic bioethicists. Our graduate program in bioethics at Loyola is geared to meet the needs of working healthcare professionals, typically in their 30s, 40s, 50s and older. These are people with extensive experience in the work they do. So we meet them already in a way as colleagues. We maintain those relationships for years and celebrate any new publications, fellowships, or career opportunities.

Nanette – We end up working with some of our students as we go forward. What this does ultimately is grow and professionalize our field. As I mentioned I had mentors like Annas, Glantz, and Art Caplan. I met Art early in my career when he was already a luminary in the field. He was so generous with his time and continues to be.

THE CENTER AND THE FUTURE

Then you joined the Center for Practical Bioethics. What drew you to serving as John B. Francis Co-Chairs in Bioethics?

Kayhan – We both have known about the Center for many years and are very familiar with its evolution from the Midwest Bioethics Center. We know Myra Christopher, who received the American Society for Bioethics and Humanities (ASBH) Lifetime Achievement Award several years ago, and others like Terry Rosell, who recently retired as the Rosemary Flanigan Chair, and the late Dr. Richard Payne, who held the Francis Chair.

Our attraction goes back to the importance of connecting our work to practice so that we’re not just writing esoteric theoretical work, but the work we do has some impact on real-world ethics, whether in clinical settings, education or policy. The other piece was timing as I’ve wound down my service for ASBH; Nanette has also transitioned from her active role with a variety of dental health organizations. We feel like we can have a real impact over the next few years with the work we can do for the Center and the support they can provide us. I think it’s a win-win.

You’ve spoken about the need to bridge the gap between bioethics research and real-world implementation. What are your hopes for the future of the field?

Kayhan – I tend to be an optimist about the future of the field. It’s definitely professionalizing and growing in the clinical ethics space. Many more health systems are committed to hiring clinical ethicists now. Other areas, like in academic bioethics, the opportunities are fewer and tend to be in medical centers and schools. The field is never going to be huge. Our professional society, ASBH, has 2,000 members. My biggest concern is that there will be disparity in expertise between well-resourced health systems that can hire highly trained clinical ethicists and the smaller community hospitals that cannot.

Nanette – What I would say is that with each new technology, there’s a need for bioethics. How do we want these technologies to change and shape us? Certainly we want to build on what Ryan [Pferdehirt] is doing with clinical ethics and ethics committee education, as well as expanding community connections.

What guiding principle would you leave to the next generation of ethicists?

Kayhan – I would want them to be open to different opportunities. We ethicists need to be creative where we can be of service and value. Make connections with different people in different organizations where you might not think there would be a need for an ethicist.

For example, I think it would be very helpful to have more ethicists in private industry.

Nanette – I agree about creativity, but I would also say listen. Listen to patients, listen to policymakers, listen to get a sense of where there’s a need and offer that support. It goes back to narrative. There are individual narratives, but also community narratives and even narratives of entities. Having the skill to listen so you can make a difference is really important.

What ethics issues are your biggest concern today?

Nanette – For me it’s misinformation and disinformation.

Kayhan – Definitely misinformation but linked to that is trust in healthcare. Also healthcare access. Access is an evergreen topic, but we can’t seem to wrap our heads around it as a country. There’s been a lot of theorizing. We make some progress occasionally, but there’s always a strong backlash. How do we as a society create a system that offers equitable care to everyone?

Nanette – Along the lines of access, an area where I’m focusing is the integration of oral health and primary care. We tend to look at those two things as very distinct. They’re funded differently. Yet oral health is integral to overall health and well-being, and we’ve disregarded it for too long.

BIOETHICS AND BEYOND

Do you have personal philosophies or beliefs that guide your work and your lives?

Nanette – Be fair. Be kind. Be honest.

Kayhan – There’s a phrase by Father Pedro Arrupe that one of my former colleagues, a Jesuit priest here at Loyola, used that I particularly like: “Fall in love, stay in love, and it will decide everything.”

How did you two meet?

Kayhan – It was the 1990s. I was working at the AMA’s Institute for Ethics and Nanette was working at the University of Illinois at Chicago. She was giving a talk that I went to with a colleague, who introduced us. So we became colleagues and kept in touch.

Nanette – When teaching at the University of Louisville, many of the folks I worked with knew Kayhan. We were in touch for a while about my move back to Chicago, then dropped out of touch because – we didn’t know at the time – but we both had had babies.

What would you like to share about your children?

Kayhan – I have two sons from a previous marriage. They’re 23 and 20, and the older one is autistic. He was diagnosed when he was three, which has definitely shaped my life and drawn me into this space of autism, neurodiversity, and disability health. He’s truly a force of nature! We travel a lot together. My younger son is a sophomore at Saint Louis University and is also a force of nature in many ways.

Nanette – I have a daughter and she is a product of artificial insemination. I was diagnosed as being infertile when I was in my early 30s. As I was recovering from surgery, my dad, who was a huge influence, said, “We need to go to a sperm bank. You have to have a baby! Your mom and I will quit our jobs and support you.” I wasn’t quite ready. He passed away shortly thereafter. But as he was dying, he made me promise that I would have a child. My child is named for him.

She’s 23, and she’s my pride and joy. She lives in New York City and has an amazing career in the film industry. When she was 10 she was diagnosed with an autoimmune condition and had a lot of challenges with that. Then at 19 she was diagnosed with autism. Kayhan and I were finishing our book at the time, and she wrote the concluding chapter for us. *

Any pets?

Nanette –  We have a beloved miniature schnoodle (schnauzer/poodle) named Hope.

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* Transitioning to Adulthood with Autism: Ethical, Legal and Social Issues (Eds, N. Elster and K. Parsi). Springer Nature. (March, 2022).

By Trudi Galblum