The ASCO Post is pleased to reproduce installments of the “Art of Oncology” as published previously in the Journal of Clinical Oncology (JCO). For information on how you can submit your own essay for consideration in JCO’s Art of Oncology, visit http://jco.ascopubs.org/site/ifc/determine-my-article-type.xhtml#art-of-oncology
The best part of my day is hearing that little voice yell, “It’s Momma!” as my son rushes to greet me with a hug. It is humbling, and sometimes terrifying, to realize that I brought a little person into the world who is completely dependent on my husband and me for survival. Few would argue against the idea that once you have children, life begins to revolve around being a parent, and this new role becomes part of your identity.
After the birth of my first son, I quickly realized that staying at work until 7 at night was no longer an option. I could not wait to get home to spend those precious hours with him before bedtime. Weekends that used to be spent working became priceless—48 hours of uninterrupted time I could spend with this new person who somehow loved me unconditionally.
When my first son was born, my friends warned me about the “mother’s guilt” that many women face after returning to work. Not surprisingly, I too went through this rite of passage. To avoid running mascara my first week back, my husband did all the day-care dropoffs. So it was a relief when I noticed that my guilt was soon overcome by gratitude for the women who cared for my son while I went back to caring for patients. This first maternity leave occurred while I was transitioning from fellowship to a faculty position, so I did not have patients to leave behind.
A Different Feeling
When expecting my second child, I made a point to mentally prepare myself for having another baby at home and for the familiar mother’s guilt that would follow when I returned to work. In contrast to my first maternity leave, the birth of my second son occurred in the midst of a more robust clinical practice, so I suddenly found myself blindsided by a different feeling: “oncologist’s guilt.” There was another part of my identity that was also important: I was a physician, a medical oncologist. My patients identified me as the person who would help them through their experience with cancer and, in a way, also depended on me for survival.
Cancer is a unique disease wherein the very word is laced with fear and vulnerability. I have found that this emotionally charged atmosphere provides the opportunity for a special relationship to be formed between patient and medical oncologist. Together, we experience bitter disappointments and celebrate milestones.
Many of us have held the hands of patients who needed to cry, sat in silence when silence was needed, and welcomed hugs from patients and family members who feel the need to express their elation and gratitude for small victories. These connections enrich the bond between physicians and patients so that they trust us when it is time to tell them that hospice is the next best step.
The first time I met Jim, I had to admit him directly to the hospital. Under these stressful circumstances, he formed a deep trust and dependence on me as his new oncologist. We discussed his incurable metastatic cancer, but he was clear about his goal to live as long as he could—he had “a lot to live for.”
Jim was the one who the nurses and I jokingly referred to as our favorite patient. He knew that he could get care closer to home but chose to drive the 2 and a half hours to my clinic because he trusted us. He insisted that I call him by his first name and corrected me when I addressed him more formally. His entire face lit up when he smiled, and he had a kind and gentle presence that put everyone at ease. He began every conversation by asking how my family and I were doing. He was the first person to ask me whether I was expecting, a question most would never dream of asking a woman. But a question like that from Jim was not intrusive or rude; it was asked out of pure excitement and joy. He was a grandfather, so children had become the most important thing in his life.
Soon before the birth of my second son, I suspected that Jim’s cancer was progressing. I ordered scans and talked to him about the next line of treatment. He was still in good shape, so I hoped he would do well for a few months while I was on leave. He tolerated the next-line chemotherapy, but his cancer continued to grow. Now, he had no remaining treatment options, and I would not be there to tell him that the treatment we had hoped would get him through one last golf season was not working.
Cancer is a unique disease wherein the very word is laced with fear and vulnerability. This emotionally charged atmosphere provides the opportunity for a special relationship between patient and medical oncologist.— Megan E.V. Caram, MD
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There are few specialties in medicine where a physician fears that her patients may not be alive after returning from a temporary leave. When my second pregnancy became apparent, each clinic visit lasted a few extra minutes as patients congratulated me and reminisced about their own children and grandchildren. When they inquired about my due date, I could see the wheels turning, “Will she be here for me when things get really bad?” My patients were genuinely excited for me and encouraged me to take a full and deserved maternity leave. But how could they not also be concerned about the many unknowns: Who would take my place while I was gone? Would that doctor make the same decisions that I would have made? Would they take the extra time when it was needed? When I saw a patient for the last time before my leave, I would also think about those questions, desperately hoping that they would still be alive when I returned. I was worried when I last saw Jim, but he was in great shape and I was optimistic. I did not believe that things would go downhill before I returned.
I do my best to initiate conversations about prognosis and goals of care when I first meet patients and with each change in their clinical status, but was it appropriate to revisit these discussions in anticipation of a possible turn for the worse while I was gone? Jim had frequently told me that he did not want to talk about prognosis. He knew his cancer was incurable, and he knew that his life was limited, but he did not want to talk about those things. He was an eternal optimist who believed that losing hope was worse than knowing what was coming. When I explained the last treatment option to Jim, I again asked whether he wanted to talk about prognosis. He was not interested.
Is it inappropriate to say good-bye to patients who may not be alive upon your return? How does a physician say, “I hope you are here when I come back?” Jim did not want to listen when my colleague told him the treatment was not working. He did not want to talk about hospice. When I returned from leave, I called to check on him. He did not ask how I was doing or about my new baby. I knew this was not the same man who made me promise to bring in pictures of my kids. He was weak and confused. His wife told me they were considering alternative medicine and that she did not want to talk about hospice.
The Work/Life Balance
The ability to balance life as a physician and a parent—the work/life balance, if there is such a thing—is different for every individual. For me, the decision to give my undivided attention to my new baby while temporarily handing off the care of my patients seemed like an obvious one. But during my leave, I frequently felt a pull to return earlier to see my patients who were transitioning to hospice, my patients like Jim.
Although I have complete trust in my colleagues, I could not help but feel guilty for leaving my patients, some of them during the worst part of their disease course. Oncology is a specialty where intensive patient care for an unpredictable disease demands constant empathy and dedication that we work so hard to give while also maintaining our family priorities. Although I present oncologist’s guilt from a mother’s perspective, I suspect that my colleagues who have taken extended paternity leave or time off for medical or family issues would have a similar experience. Oncologist’s guilt may not be unique to women or maternity leave, but I believe that it is unique to our specialty.
As a physician, it is hard to accept that there is not a solution to every problem, but as an oncologist, perhaps I am more primed to understand that not all problems are fixable.— Megan E.V. Caram, MD
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Patients with cancer are looking for someone to help them navigate their journey. I do not hold a narcissistic view of my abilities as a physician; I do not believe that I am irreplaceable, but changing the navigator when things are dark and stormy may add to this already difficult and stressful time of a patient’s life. Although I wish that there were a solution to this problem, I am not sure there is one. A clinic model that includes patient sharing may obviate the stress on patients when a physician is unavailable, but such a model also detracts from continuity of care and the patient-physician relationship. Alternatively, remaining available while on maternity leave would undermine the important recovery and bonding that is essential for a mother and her newborn baby. As a physician, it is hard to accept that there is not a solution to every problem, but as an oncologist, perhaps I am more primed to understand that not all problems are fixable.
I do not regret the decision to take maternity leave and to put my family first. I am one woman and my sons have only one mother. Being a parent has made me a better oncologist. I have learned to be more efficient, patient, and compassionate. I have no regrets about going into medical oncology and about developing relationships with my patients. Being an oncologist has made me a better parent. When I am up for a 3 AM feeding, answering the “why?” question for the 20th time in 2 minutes, or pleading with my son to please stop throwing his milk on the floor, I remember that many of my patients are robbed of these everyday gifts. Then I hug my family a little tighter and count my blessings.
Jim eventually agreed to hospice, and he died a few days later. I did not get to show him the pictures of my baby he had wanted to see. I wish I could have been there to tell him that after all of our small victories, hospice was now the way to go. But I was not there to help him finish his journey. As I have reflected on my experience, I have made peace with oncologist’s guilt; perhaps it will make me a better physician. Much like the mother’s guilt I experience while I am at work can be harnessed to appreciate every minute I spend with my sons, my oncologist’s guilt has pushed me to improve the quality of my care and to strive to make each minute of every visit valuable to my patients. ■