Elizabeth Lilley

Next Generation is a BWH Clinical & Research News (CRN) column penned by students, residents, fellows and postdocs. This month’s column is written by Elizabeth Lilley, MD, MPH, a third-year research fellow at the Center for Surgery and Public Health (CSPH) at BWH and general surgery resident PGY-3 at Rutgers-Robert Wood Johnson Medical School.

People are sometimes surprised to learn that I am a surgical resident interested in palliative care. In the rescue-oriented culture of bright lights and cold steel, the surgeon’s dictum is “a chance to cut is a chance to cure.” However, an early and difficult lesson of surgical training is that a cure is not always possible. In these cases, palliative care is crucial.

My first introduction to end-of-life care occurred 15 years ago, when a friend was diagnosed with widely metastatic liver cancer. In the few short months between his diagnosis and death, suffering was profound—not only for him, but also for the family and friends who loved him. When it became apparent that he would succumb to his illness, support from home hospice helped him achieve his goal of filling each remaining day with meaning and purpose. Instead of the frequent hospitalizations that are common at the end of life, he was able to manage his symptoms at home and spent his last days selecting Christmas gifts for his family. On the day before he died, he summarized the lessons of his spiritual journey, writing: “Death is not an evil at all, just a different blessing that requires a more positive frame of mind and good reminiscence.”

During my first two years as a surgical resident, I became aware that my friend’s end-of-life experience was exceptional. Like many patients facing terminal illness, he expressed a desire to forego life-prolonging interventions in favor of comfort-directed care. But, unlike many patients, he was able to successfully accomplish that thanks in large part to early support from palliative care and home hospice. Unfortunately, several reports have noted that the intensity of care patients receive at the end of life has been increasing in recent years, with nearly 30 percent of patients receiving care in an ICU in their last month of life. While public opinion surveys consistently demonstrate that the majority of Americans would prefer to die at home, only one third actually achieve this goal. This mismatch between what patients consider a “good death” and the actual experience of dying in America highlights the need to better align treatment decisions with patients’ values and preferences.

While the need for palliation is most evident at the end of life, the role of palliative care is not restricted to patients with terminal diagnoses and those who forego disease-directed care. When delivered alongside curative surgical treatment, palliative care provides an added layer of support by addressing the multitude of physical, social and emotional needs that are associated with burdensome treatments, acute surgical conditions and chronic, life-limiting illnesses. Nonetheless, numerous studies indicate surgeons remain resistant to palliative care until death appears imminent. Palliative care consultations are less common among surgical patients than their medical counterparts and are reserved for older patients, critically ill and those at the end of life. As a result, many surgical patients do not receive the full benefits of palliative care.

I came to the Center for Surgery and Public Health at the Brigham more than two years ago to study the role of palliative and end-of-life care in surgery. My arrival at the CSPH coincided with a focused, multidisciplinary effort led by Zara Cooper, MD, MSc, and Angela Bader, MD, MPH, to produce research on aligning surgical decisions with patients’ goals and values. Over the past two years, my work has aimed to describe the burden of palliative care needs among surgical patients and to better define the role of palliative care in surgery. Like all researchers who are working to pioneer this nascent field, I have met challenges in reaching surgical audiences and gaining buy-in. Thankfully, I have been fortunate to work with mentors and colleagues who challenge me to ask complex questions and think twice about easy answers.

Much of our work is rooted in our clinical experiences. After a night on-call, Dr. Cooper brought up the lack of outcomes data to support complex treatment decisions for patients with malignant bowel obstruction. With support from a Brigham Research Institute Microgrant and several hours brainstorming with my officemates on our whiteboard, we were able to turn this clinical dilemma into a research question, for which I will receive an Owen H. Wangensteen Excellence in Research Award at the American College of Surgeons later this month.

However, my own clinical experiences have also convinced me that research will only be part of the solution. Recognizing and addressing patients’ palliative needs is a skill, requiring technical precision, practice, the desire to improve and an awareness that even the most well-meaning physician can be consumed by the impulse to conquer mortality. Widespread, lasting improvements will require a cultural shift in medicine whereby timely and appropriate delivery of palliative care becomes synonymous with high-quality care. As care providers, we will need to hold ourselves and each other accountable in order to meet the need for palliative care and protect our patients from our best intentions.