Like many starry-eyed first years, I arrived at Duke certain that I wanted to get involved with research, all the while having a very rudimentary understanding of what “research” actually is. I was also pre-med, and my first inclination was to join a science lab where I could sit at a bench, pipette solutions, culture cells, and make discoveries on a microscopic scale. So that’s what I did – and I loved it! I ended up spending four years doing lab research and wrote a senior honors thesis in the biology department.
I applied to the REGAIN Bass Connections team at the end of my sophomore year as a way to complement my basic science experience. I was hoping for the opportunity to approach medical research from a new perspective and to broaden my understanding of existing areas for improvement in the healthcare system. I had no idea at the time how meaningful this experience would be in shaping how I view medicine and how I view myself as an independent researcher.
REGAIN stands for Roadmap for Evaluating Goals in Advanced Illness Navigation, and this interdisciplinary project team, which is led by the Duke Center for Palliative Care, focuses on improving goals of care conversations at Duke Health and more broadly advancing the field of palliative care.
So, what exactly is palliative care? Though it’s often equated with hospice care, palliative care encompasses a range of interventions designed to improve quality of live for patients with serious illness by addressing medical needs as well as mental, emotional, social and spiritual wellness. Palliative care can be utilized in tandem with curative treatments, and unlike hospice, palliative care can be a part of a patient’s care plan at any point along the progression of their illness.
In essence, palliative care is about treating a whole person. It is about engaging in meaningful conversations to understand a patient’s goals and priorities, and then designing care plans that align with those goals and priorities. As an aspiring doctor myself, I was drawn to this humanistic view of medicine.
Often when we think about medical progress (or at least when I thought about medical progress before REGAIN), we think of new diagnostic tools or drug discovery or high-tech medical devices. I’m interested in all of these advances – I even hope to contribute to them in the future! – but this team also prompted me to wonder: Why is more compassionate care not more regularly considered cutting-edge?
Many representations of medicine I’d seen before REGAIN likened a doctor to a mechanic with a box of tools they could use to fix whatever problem walked into their office. And if they couldn’t fix the problem – well, maybe they just weren’t that great of a doctor. But I believe this depiction is flawed in that it suggests a patient can be either broken or fixed, damaged or whole.
In reality we humans are not simply a collection of (potentially) leaky pipes or bad wiring. In fact, we are much more complicated, and this is what makes medicine so fascinating. Our bodies and our minds are capable of extraordinary things, and there are so many ways that we can exist on a continuum of wellness.
There are also so many choices that patients can make when experiencing serious illness, not all of which include following through with the most aggressive treatment available. My experience on this team helped me adopt a more comprehensive view of medicine and convinced me that doctors have the ability (and moreover the responsibility) to focus on not only a patient’s physical ailments, but also their personal preferences for care and overall psychosocial well-being.
As a Bass Connections team, we discussed topics such as these, met with palliative care providers at Duke Hospital, read articles about advanced care planning and interviewed friends and family to gain their perspectives. But ultimately, trying to explain the REGAIN Bass Connections team is like trying to explain nearly a dozen different research teams all at once because of the program’s unique “hub-and-spoke” model. Each team member was paired with a palliative care researcher at Duke to carry out independent work, which we then came together to share with one another.
For two years, I had the chance to work with Dr. Brystana Kaufman, Assistant Professor of Population Health Sciences at Duke. While other students focused more closely on the implementation of palliative care within Duke Health, Dr. Kaufman and I chose to zoom out and look more broadly at palliative care policies and accessibility across the country.
During my first year, I led a project using survey data from the National Cancer Institute to investigate disparities in knowledge of palliative care between metropolitan and non-metropolitan regions of the United States. Our work was published in the Journal of Palliative Medicine, and it was amazing to see the product of our efforts out in the world for others to learn from and build upon.
This past year, I worked on creating a database of U.S.-based palliative care policies, programs and utilization at the state-level to serve as a potential resource for future team members. I also explored Medicare reimbursement strategies for palliative care interventions. My work with Dr. Kaufman and my experience on this team gave me the skills and confidence to join two additional population health research teams outside of Bass Connections where I am still contributing to ongoing projects post-grad.
Overall, my Bass Connections experience has been one of burgeoning independence. I’ve learned to think independently and to challenge my own and others preconceived ideas about the healthcare system. I’ve also learned how to work as an independent researcher as well as how to lead teams, seek out collaborations and generate new ideas. My idea of what constitutes medical research has expanded exponentially, and my confidence in my own ability to create impact in and out of the lab has grown in equal measure. I’m incredibly thankful to the Bass Connections program – and specifically to my mentor Dr. Kaufman and team lead Dalton Hughes – for helping to make me into the researcher I am today, and for having such a significant influence on the doctor I hope to become.