Dr. Heather Leeper, author of Palliative and end-of-life care of neuro-oncology patients

We’re delighted to present the first Q&A in our Featured Contributor series, in which we spotlight some of our outstanding authors and editors responsible for the body of content in MedLink Neurology.

Dr. Heather Leeper, author of Palliative and end-of-life care for neuro-oncology patients, received her medical degree from Chicago Medical School and a Master of Science in Applied Physiology from Rosalind Franklin University of Medicine and Science. She completed neurology residency at the University of Wisconsin Madison, neuro-oncology fellowship at Mayo Clinic in Minnesota, and hospice and palliative medicine fellowship at the University of Illinois during which she developed expertise in symptom management, communication, and palliative medicine principles. In 2019, Dr. Leeper joined the National Cancer Institute’s Neuro-Oncology Branch at the National Institutes of Health where she engaged in patient-centered outcomes research and worked to advance equitable supportive and survivorship care for all those affected by primary brain and spinal cord tumors and their care partners. In December 2022 she joined the University of Chicago’s Department of Medicine, Section of Geriatrics and Palliative Medicine faculty as neuro-palliative care program lead.

University of Chicago Bio for Heather Leeper MD MS

Q & A:

Tell us about your early background.

My father, an American, was an officer in the US Army and then worked for Department of Defense as a civilian federal employee, which meant our family moved a lot. My mother is from Germany, and we moved to Germany when I turned 12. I attended US Department of Defense high school and ultimately graduated from a small women’s college in Boston, Massachusetts with a bachelor’s degree in women’s studies as I thought it was essential for me to understand the underpinnings of society and the social construction of race, class, and gender if I were to be able to practice socially engaged medicine and reach people where they were--regardless of their race, class, or gender. I put myself through college, graduate, and medical school; I graduated from Chicago Medical School, which exposed me to a wide diversity of patient populations within different community and academic hospitals throughout Chicago.

What or who motivated you to pursue a clinical or scientific career? How did you get interested in neurology and your subspecialty?

When I was 17, I became acutely and critically ill. I spent 3 weeks in intensive care and 2 more weeks on a regular ward before I was discharged home to convalesce for what turned out to be another year. I experienced the intense anxiety of not knowing whether I would live and ever leave the hospital again or not, harrowing medication side effects, the inability to get out of bed and to walk; I endured innumerable blood draws, diagnostic procedures, and doctor visits, but I also experienced a sense of bonding with my nurses and physicians who were up with me all hours of the day and night. I had already been seriously considering becoming a physician, and my life-changing experience more than reaffirmed my desire to become a physician to take care of people having experienced what it was like being a patient.

During medical school I thought I was going into internal medicine. But in my neurology clerkship, at the end of my third year, I correctly diagnosed a middle-aged man with myasthenia gravis on the third morning of seeing new patients solo. That was a landmark experience for me. On a cognitive level, as a visual learner and a pragmatic person, neuroanatomy paired with the functional assessments of people’s neurologic status through detailed history-taking and the neurologic exam really clicked for me. On an emotional level, I was really moved by the profundity of the impact of neurologic illnesses on people. So, I decided to pursue neurology. While doing neurology consultation rotations at academic hospitals as a fourth-year medical student, I was exposed to neuro-oncology. I was completely taken by the intersectionality of all the subspecialists—the neurosurgeon, the neuropsychologist, the speech pathologists, the neuropathologist, the neuro-oncologist, the neuroradiologist—in caring for people with these impossibly complex brain and spinal cord tumors. I also had a deep-seated awareness that these people were facing their deaths and that extraordinary expertise in communicating with them and their family members was needed. And I wanted to have that expertise and be their physician.

Also during medical school, I became aware of palliative medicine and that there was a care option for people who were dying called hospice. When I started my residency at the University of Wisconsin, I did an inpatient hospice rotation as an intern, and as a senior resident I spent elective time with the inpatient palliative care team. I was actually quite torn about whether to do hospice and palliative medicine fellowship, but I had already lined up my neuro-oncology fellowship, and I didn’t think there would ever be job prospects for someone who was a neurology- trained neuro-oncologist and a hospice and palliative physician. So I pragmatically continued on with my neuro-oncology training plan, but with my heart very much still in palliative medicine. Later, as an attending in neuro-oncology and neurology, I realized how much more I wished I knew about person-centered care as practiced in hospice and palliative medicine and that the people I was taking care of and their family members needed person-centered care as much if not more than they needed tumor-centered care given the incurable nature of most of the tumor types and the associated morbidity. Subsequently, I also learned more about survivorship care within oncology, which shares the same underpinnings as palliative medicine, namely to improve quality of life during, through, and beyond cancer treatment by relieving suffering caused by symptoms and distress. My engagement with survivorship care within neuro-oncology aligned with my passion and drive to be an expert clinician for people with serious illness, especially of the nervous system, and a scholar of person-centered care. With this came the decision to pursue the deferred hospice and palliative medicine fellowship and broaden my engagement with the emerging field of neuropalliative.

Did you have any mentors who guided or inspired you?

I have been inspired and supported by many of the physicians, nurses, social workers, and chaplains who trained me throughout my medical education; I trained across hospice and palliative medicine, neuro-oncology, medical oncology and neurosurgery and I am very fortunate to have mentors and colleagues, each of whom have an incredible wealth of knowledge, across all these fields.

What do you consider your most significant career achievement to date?

I have been championing survivorship care as a form of palliative care since 2016 and have had the opportunity to author several articles and collaborate with other clinicians and/or researchers from different disciplines and professions to move the initiative forward within the field of neuro-oncology. I hope to build on this work and increase the engagement of neuro-oncology with palliative medicine through its principles of person-centered care.

Please expound on why there is value in incorporating palliative care into the care of neurological disorders broadly, and in neuro-oncologic disorders specifically.

Within the practice of allopathic medicine, the biomedical model is the dominant approach, which is focused on disease--its diagnosis, its pathology, and its treatment. Conspicuously absent in this model is the person who has the disease and is living with it and possibly dying from it. An alternative model is the biopsychosocial model, which is the approach used not only in palliative medicine but also nursing, physical and rehabilitation medicine, and physical, occupational, and speech therapy. In this model, the person experiencing the illness is at the center and is influenced by biological, psychosocial, and physical/environmental factors. This affords an approach to care that is person-centered without the disease itself being medical care’s imperative. The vast majority of neurological illnesses, especially most cancers of the CNS, are incurable, with secondary preventive treatments aiming to mitigate disease recurrence or ameliorate symptoms as primary prevention is not possible. Given these circumstances, the health-related quality of life of individuals living with neurologic conditions is paramount. Health-related quality of life is deteriorated by many factors but most significantly the suffering arising from symptoms and functional impairment and distress that can be multifactorial. Person-centered care as practiced through palliative medicine addresses these factors by providing impeccable symptom management and therapy and/or assistive devices to address functional impairment per the values, goals, and preferences of the patient, and utilizing high-quality communication skills to discuss and intervene where possible on any distress and its underlying causes. In other words, the brain tumor itself would not be the focus of the clinical encounter but rather the person who is living with the brain tumor given the context of the tumor’s growth and intervention options (or the tumor’s lack of growth) and how the person is feeling and functioning and their health-related quality of life.

Where do you see the subspecialty field of neuro palliative in 5 to 10 years?

As an emerging subspecialty, my hope is that in the next 5-10 years more neurologists across all subspecialties will train in hospice and palliative medicine in order to advance the field’s clinical practice and clinical research as there is much yet to be learned and better understood. I also anticipate that end of life care and neuroethics will concomitantly become more prevalent issues based on the aging of the general population in the United States and several other Western European countries and the increased incidence and prevalence of chronic progressive neurologic conditions, including glioblastoma, in older adults.

Analogous to most neurologic subspecialties, there are few neuropalliative care specialists. In turn, the majority of care for this patient population is conducted by generalists (often non-neurology generalists). Can you comment further on this?

All clinicians irrespective of their specialty should have requisite “primary” palliative medicine skills in order to provide basic symptom management, including pain management, basic communication about goals of treatment intent (curative versus palliative or secondary prevention intent), prognosis, and the goals of medical care in terms of the patients’ values, goals, and preferences. Indeed, the supply of specialty palliative care providers is far outstripped by the demand, and this is also certainly true of neuropalliative care clinicians. Recognizing this supply-demand imbalance, those neurologists who are palliative medicine trained also have roles as educators to their fellow clinicians at their local institutions and through new and evolving medical education curriculum requirements regarding the teaching of palliative medicine skills. Hopefully, neuropalliative care clinicians are embraced by their neurology and non-neurology colleagues alike for their ability to not only teach neurology but also their palliative medicine principles and skills.