A Caregiver’s Experience Defines a Physician’s Practice

As a first-year hematology/oncology fellow, I often find myself involved in difficult conversations with patients and families. During a recent week, I had to discuss metastatic cancer diagnoses in multiple young patients, most notably a 28-year-old woman with a new diagnosis of metastatic breast cancer. I had to be brutally honest with the patient and her family members while she sat in her examination chair in shock.

I tried to address their questions, some of which I did not know the answers to, ranging from the treatment timeline to the possibility of the patient being able to become pregnant. I was extremely impressed with my attending, who is always terrific in these situations.

“I’ve been a medical oncologist for many years,” he told me. “You learn a thing or two over time.”

Other first-year fellows understand how difficult these encounters can be, yet we put in our orders, write up our notes, and move on to the next patient. Friends and colleagues often ask how I manage to maintain my composure after caring for patients with advanced illnesses. I tell them about my own story.

I was abruptly introduced to the field of hematology/oncology while completing my undergraduate studies at New York University in October 2009. My father, Lenny, received a diagnosis of acute myeloid leukemia (AML). His physician referred him to a hematologist who immediately commenced an aggressive course of chemotherapy.

My father was my best friend; life without him was inconceivable. I was on the receiving end of heart-breaking news on multiple occasions. I would wake up every morning while my father was admitted for treatment, hoping he was not sent to the intensive care unit overnight. It was a tremendous burden on me, my mother, and my sister. Meanwhile, I had to try to focus on my education. But how could I study organic chemistry while constantly worrying about my father?

My mother rushed to the hospital every morning to meet the primary care team as they made their rounds. We often felt we were not being given enough updates or explanations, and I was frustrated with the lack of communication. I cannot recall a time when any of the physicians sat down to speak with us. My father was not a complainer and did not want to feel like a burden, which forced my mother to essentially spend every day with him in the hospital until visiting hours ended.

What made this experience more difficult was not understanding the pathophysiology of AML at the time. I did not know what adverse effects to expect with each chemotherapy. I had not started medical school and was not familiar with most medical terminology. The staff would hand us my father’s blood counts every morning, but I could not interpret the results and no one took the time to explain.

Regarding wait times, I am very empathetic to the patients and family members who spend hours in the cancer center each time they visit. I remember waiting for more than an hour each time my father had to visit his hematologist, followed by another wait for chemotherapy. We felt pushed around like cattle. I was sometimes upset with his team of providers for not seeming empathetic—we felt like outsiders who were showing up for numerous appointments without much reasoning. I would sometimes take out my phone and stream big band music from the 1940s as well as modern jazz after my father and I were seated in the infusion suite, because we both enjoyed it. I was amazed by his knowledge of the music from that era. It provided a sense of tranquility.

My father ultimately succumbed to the adverse effects of his treatments. Despite the desperate and tragic circumstances, I grew fascinated with the number of treatments being introduced by the medical community to combat leukemia and other malignancies.

When speaking with patients and their families, I talk to them the way I wanted to be when I was a caregiver. I avoid using advanced medical jargon and instead simplify the diagnosis and treatment regimens. I show patients their CT scans and tell them, “This is your body and your diagnosis. You have every right to look at your scans.”

I write things down for patients when I sense there is something they do not understand, whether it is a medication schedule or the pathophysiology of their illness. When I see a patient who I know has been at least 20 minutes in the examination room, I apologize for the long wait before introducing myself. I also tell the patients and their families that they should never hesitate to contact us, reminding them that it is better to be safe than sorry.

Physicians who spend an extra 1 to 2 minutes making small talk with patients can mean the world to a patient and their caregivers. I recall the office visits with my dad where there was not much of a conversation with his doctor who would often walk in, perform a brief exam, say a few sentences, then walk out. We would have welcomed an occasional comment such as “It seems like a nice day today; do you have anything planned?” or “Are you looking forward to the holidays?” Though it is not mandatory, it helps to strengthen the bond between patients and their doctors.

I find that most patients and family members enjoy encounters with doctors who can make them laugh. Whenever my patient laughs during an encounter, despite the circumstances, I know that the patient feels comfortable with me and has faith in my team. If there is a strong bond between the doctor and patient, the patient is likely to be more adherent to their medications and show up for their scheduled visits. Of course, there are certain situations where it is safest to avoid using your sense of humor—we must use our best judgment and maintain situational awareness.

My experience as one of my father’s caregivers during his battle with AML has allowed me to form strong bonds with many of my patients with solid tumor and hematologic malignancies. Standing in the care-giver’s shoes has given me a unique sense of empathy—more than most physicians, I know what patients and families are going through. Although there are some weeks that are harder than others during my first year of fellowship, I sincerely feel that there is nothing I would rather be doing than practicing medicine.