Privilege

by H. Claire West, UMMS 2007

Student Finalist for the 2006 Gerald F. Berlin Creative Writing Award

One way I dealt with the terror of the first few weeks on the wards was jumping into new and daunting situations without giving myself the time to pause, to become overwhelmed with self-doubt, and chicken out. The way I saw it, the sooner I became comfortable dealing with patients and treating them the better. That being said, as admitting a new patient was probably the situation I most feared, I was always first to volunteer when my resident offered our team a new admission. I have to admit as much as I loved the medicine clerkship experience, the first thought that came across my mind when I heard we had a new patient in triage was dread. The complete unknown, while exciting, was terrifying.

This was my state of mind when my resident paged me in my second week of medicine with an admission. We were on long call and he was kindly giving me our first patient, knowing how much longer I take to wade through the process and write a nice shiny med student note. My resident found me and told me that this was a “simple admission.” A woman with metastatic cancer had come in for pain management.

I cannot tell you how my fear and dread magnified. This was the worst case I could imagine! Cancer scares me. Yes, it scares everyone. As a medical student I found it an incredibly complicated disease. I didn’t know enough about prognosis, progression and most of all treatment. How would I approach this patient? No diagnostic dilemma here, just someone dying of a horrible apparently incurable disease coming in to be treated for the most feared complication, intractable pain. Did I mention my confidence in pain management was not high? All pharmacology knowledge scurried away as I panicked on how to approach this admission. Oh right, and she was 51, younger than my mother. Nothing scared me more than treating a dying patient except treating a young dying patient. I just wasn’t comfortable with death. How could the awareness of impeding death not muffle every attempt at conversation we would have?

Inside curtain 8 was a tiny, pale, elven woman. Tachypneic and quivering in obvious pain, she was curled on her side in an awkward position in an attempt to get some relief. She had very bright eyes and an ageless quality, very like Dickens’ Ghost of Christmas Past. She had breathless speech, and was visibly anxious, but was so kind.

I asked her about her pain scale and assured her we would do all that we could to manage her pain. I left the room while the nurse gave her dilaudid, after twenty minutes when I returned, Mary assured me she was feeling better. Her pain now at a 6 rather than the 10 she had arrived with. She was thrilled to be able to sit up in bed and did her best to cooperate with my questions and timid physical exam.

She had been diagnosed with Hodgkin’s lymphoma at 31. During her first round of treatment her husband left her. That year she was diagnosed with depression and developed pulmonary fibrosis as a result of her chemotherapy regimen. Twenty years later she developed breast cancer, a known complication of the mantle radiation she received as treatment for her lymphoma. She had a right mastectomy, but still developed bony metastasis to her scapula and spine within three years. She had been undergoing bouts of chemotherapy but had stopped in April for a “treatment vacation” at the recommendation of her oncologist after she presented with unbearable fatigue.

It was hard for me to listen to this story and not cry with pity for this sweet woman. During our first year we spent time discussing the concept of a good death and I started to think about the fact that this woman knew she was going to die and our most important job was to make her comfortable, autonomous, and allay her fears. I asked her what her fears were and she confessed that in addition to her pain she feared the loss of control over her body and her treatment. Our team encouraged her involvement in her pain management, allowing for a range of dosage in order for her to decide for herself the fine line between pain and altered consciousness. It was easier to suppress an outpouring of pity for such a tragic patient when I could channel my desire to help her by keeping her autonomous and informed. She often complained about her bad memory and would joke about her “chemo brain.” Her forgetfulness was probably compounded by the high doses of narcotics she was receiving by this point and often I would sit with her and write down her questions for the oncologist so that when he came on rounds she would be able to have the answers she needed.

In addition to the reward of working so closely with a lovely person, I had the privilege of partnering with one of our school’s most distinguished oncologists. He graciously involved me in her care, and I felt honored to be the first contact for both this attending and the patient when coordinating care. I was touched and relieved to see that this seasoned doctor and all the nurses and staff on the floor were devastated by this case. I’ve never felt more collaboration between teams than with this patient. We were all frantic to control pain that was heartbreaking to witness. Mary’s course worsened quickly after the first few days. She became almost impossible to move. Her radiation treatments were often delayed until we could medicate her enough to be transported to the cancer center and placed on the table. I would go with her because I initially feared that transport would not be gentle enough with her. How would they know that her gurney had to be carried over every tiny crack in the hospital floor in order to prevent a spasm? They knew. Everyone I interacted with was exquisitely sensitive in their care of Mary.

Despite never fully being able to relieve her pain, I found satisfaction in caring for Mary; she was so sweetly grateful for anything I did to try to make her stay more bearable. I loved that she called me by my first name and made stupid jokes. For two weeks I watched her wax and wane. I would see her in the morning and she would be sweating, crying out and unresponsive; I would return in the afternoon to see her sitting up in bed laughing with her fiancée. These swings in her state made me believe that we were closer to successful pain management. Her attending and I began planning her discharge with follow up rounds of more chemo and radiation. I thought she would come out of this “episode” and live for a few more years; the treatments would be able to hold her cancer at bay for at least a while.

The last time I saw Mary I had just brought her back from a radiation treatment, she was virtually unresponsive to commands; she would just sweat and shake. My efforts to wipe her forehead with a damp cloth just sent her whole body into spasm. On the Friday of our intraclerkship I had planned to return to the hospital in the afternoon to see her and say hello. But 5 o’clock rolled around and I just wanted to get home and see my husband and enjoy a rare night out. We enjoyed a gorgeous summer weekend and I didn’t check my email until Sunday, I had an email from my intern. He knew how I felt about Mary and took the time after our rotation was over to write me:

“So for your information, here’s an update on our 51 yo w/ metastatic breast cancer to L3… Mary.

Yesterday, I walked into her room around 7:30am and I saw her peacefully sleeping on her bed. She was not as responsive but I didn’t think much of it. Then around 10:30am I got a call from the RN stating that she was diaphoretic with shallow breathing. I ran up there and she was soaking wet from head to toe in sweat with shallow breathing. She was slightly responsive to me but it was clear that she was slowly becoming unconscious. I called the resident and we contacted the attending. In brief, we ruled out MI and PE and all three of us did a thorough neurologic exam and couldn’t figure out what was going on.  The initial thought was that she was overdosing on opiates, but she was tachycardic with normal respirations and normal BP. A person overdosing on opiates would have pinpoint pupils, bradycardia, and decreased respirations.

In the end, the attending believed that she was in a comatose state (she was totally unresponsive, pupils mid-size and fixed) and since she was DNI/DNR, she was to be put on comfort measures.

The resident and I went back in the room and started testing her responsive to painful stimuli. The resident really put her through some serious pain that even I cringed. I put my fingers in her hand and yelled at her ear to grab my fingers if she heard me. And lo and behold, she grabbed my fingers. After approximately five hours of a comatose state, she suddenly woke up and opened her eyes and smiled and starting talking and laughing. Her sister and friend came running into the room and started crying and hugging her and I went to get the attending. He just looked at me at the nurses’ station and couldn’t believe what I was saying. He ran into the room and just stood there in disbelief. He asked her if she was in pain, and she replied “Pain? Yeah, I’m in pain because of the Red Sox.” And then she started laughing and the rest of us started laughing.

Her entire family, including her mother who is wheelchair bound, as well as her fiance, came last night and spent the night together.
Before I left work today, I pronounced her dead at 5:25pm. It was extremely painful to see a once vibrant and smiling lady lying eyes and mouth open, pale white and motionless. The image will forever be burned into my memory. I can honestly say that this experience reminded me that my position was not just a job, but actually a privilege.”

I suppose in hindsight I shouldn’t have been shocked that she died, but when I read the email I thought I was going to throw up. I put off seeing her for really no reason at all; it could have been something as petty as wanting to avoid weekend traffic. I never said goodbye. I cried for Mary. I cried because despite her chronic illness, her death was a surprise for me, and my first patient death. I cried because I hated myself for not seeing her one more time before I left the service. I cried because a wonderful person died young and suffered incredible pain.

I was lucky to have Mary as a patient. She was a wonderful, patient, gracious teacher. I was lucky to have an intern who took the time to relay the last day of her life to me; it was an incredibly thoughtful thing to do. I am glad to know that tragic stories affect not only novice medical students, but interns, residents, nurses and seasoned oncologists alike. The privilege of being a part of someone’s death is almost to stunning for me to think about. It may be best not to dwell overly on the import or else I would be frozen with fear that I was not dignifying every minute of every patient’s life the way I should. This lesson was potent in affecting the way I will view all patient interactions in the future. This is an incredible privilege.