Anna Kaminsky, DO
As the end of my hematology/oncology fellowship draws near, I am reminded every day that oncology is not about winning or losing. Notwithstanding our wishes, most malignancies are not curable. There are many misconceptions in the medical field about death and end-of-life care. One of the biggest misconceptions that I have encountered is regarding the role of palliative care—that it is “the end of the road,” or “the last resort” and “sad.” I am happy to start practicing at a time when this is no longer the case. However, this misconception remains prevalent, not only among patients, but also among physicians and, even more surprisingly, among oncologists— physicians who face death on a daily basis.
To help educate physicians and take away the negative stigma associated with palliative care, most hematology/oncology fellowship programs now offer some form of palliative care training in their curriculums. At the Allegheny Health Network, where I have pursued fellowship, a month-long palliative care rotation occurs during our last year of fellowship when we participate in inpatient consults, outpatient clinics, and didactics. During my palliative care rotation, a particular experience with a patient taught me a valuable lesson as a soon-to-be practicing hematologist/oncologist. I first encountered Mr L, a 64-year-old gentleman with multiple comorbidities, during my oncology consult rotation 6 weeks before my palliative care rotation. Mr L had a large mass that was partially obstructing his esophagus, causing dysphagia and weight loss. My consultation with Mr L took place at the time of his initial diagnosis with locally advanced squamous cell carcinoma of the esophagus.
After carefully reviewing his chart with his oncologist (my colleague), we went in to speak with Mr L and his family, who were anxiously waiting for us. We began our discussion by advising Mr L and his family that his tumor may be inoperable, due in part to its size and location, and also his general health and multiple medical problems. We also advised him and his family that his treatment course would be long and would require input from multiple specialists, including surgeons and radiation oncologists, as well as us, medical oncologists.
Together, we set forth a plan for Mr L and his family. Because he was very cachectic and unable to meet his nutritional requirements, we insisted on the use of a feeding tube, followed by rehabilitation at a skilled nursing facility, while we proceeded with chemoradiation.
We answered all of Mr L and his family’s questions and he was transferred to the skilled nursing facility. At this time, he went off my radar. Six weeks later, while on palliative care rotation, I noticed Mr L’s name on the list of new consults.
Mr L had developed worsening anemia that required blood transfusions, and he had been transferred to the inpatient service. The original plan, to begin radiation treatment for Mr L during the week of his consult, was abandoned. After a thorough evaluation, it appeared that Mr L’s condition had significantly deteriorated and he was just not strong enough to undergo radiation treatment.
The primary team had consulted with palliative care to discuss end-of-life issues with Mr L and his family, as it did not seem that Mr L would be able to receive any treatment for his advanced esophageal cancer. I felt very uncomfortable with the idea of going to his room and talking to him about death and end-of-life issues, as I was the one who, a very short time ago, had discussed a solid treatment plan with him that had included multiple evidence-based treatment options.
I looked through my consult notes for integral information related to palliative care—for example, spiritual beliefs, family support, and advanced planning. I quickly realized that I had not addressed these issues at all. In fact, I realized that the words “palliative” or “palliation” were not mentioned in any of my notes. With a heavy heart, I walked into the room where Mr L was waiting. My colleague and I spoke with him and his daughter and explained that the goals of treatment had shifted. Now, the focus would be on controlling any symptoms he might have and maintaining his quality of life. He and his daughter decided that he would be transferred back to the skilled nursing facility and would continue to receive blood transfusions and medications with palliative care follow-up. He would transition into hospice once his quality of life was no longer maintainable.
Surprisingly, there was no sense of failure or loss. He did not feel sick and did not have any symptoms. His goals of care were met, and both he and his family were at peace. In fact, his daughter advised us that he had been under hospice care previously (4 other times) for other medical problems and had always pulled through. Although both Mr L and his daughter knew that this time would be different, they were comfortable with the plan and so was I— as an oncologist and as a palliative care physician.