Life,Death and … Rice and Beans

The referring hospitalist told me the way I would be most helpful in addressing our palliative care consult for Debbie would be to explore her understanding of her illness: “She just doesn't get it.” I cringed inside because exploring prognosis and disease understanding in a 35-year-old woman with widely metastatic papillary thyroid cancer was a tall order, especially when I am told she may not grasp her situation. I did my background work, noting her panoply of symptoms: severe, unremitting back pain from vertebral metastasis, shortness of breath and sternal chest pain from disease in her mediastium, and a newly initiated course of brain radiation from cerebellar disease found on her recent imaging. I knew she had been working with the acute pain service for the past 12 days, that they had adjusted her regimen multiple times and injected her sternum with steroid without subjective improvement in her pain control. I also knew she had three children, the youngest only 20 months old.

I walked into her room. She greeted me in a friendly way and apologized for continuing to eat her cereal from its plastic, single-serving container. We chatted about her family, her three children and their fathers. Her mother was busily tidying up in the other part of the room. I asked about her supports, a religion, and her symptoms. She showed me pictures of her kids on her phone. She rearranged her position, grimacing, and squinted closely at her phone. With a crooked smile she shared that the baby was “a pain.” I laughed and countered that all 20-month-old babies were. When her mother gathered her coat to leave, they conversed in Spanish. Debbie translated their exchange for me: “I told her no more rice and beans! Bring me something other than rice and beans!”

There was a knock at the door and a notary introduced herself. The unit social worker had arranged for her to notarize paperwork that would begin the legal guardianship process for her three children after her death. The notary came in and unpacked her official stamp. Debbie rummaged in her bedside table for her wallet and driver's license. Someone commented that she looked different in her license picture and Debbie quipped, “I used to be fat.” Debbie borrowed the pen in my hand to sign the papers, handed the pen to the notary, who also signed, clamped her heavy embossing seal on the papers, and in a flash was gone.

I sat in the corner stunned by the enormity of what I had witnessed.

The door clicked closed and we were alone. She looked at me and then looked down. Her face grew splotchy, but her eyes did not well up. I clenched my jaw and leaned forward toward her, forearms on my knees, eyes on the floor. I acknowledged that what she had done was incredibly hard. She asked, “Do you think I did it too soon?” I told her I didn't think it was too soon. She told me how she wanted help writing down her wishes for her children after she died. That she hoped her 16-year-old daughter would eventually take guardianship for her youngest daughter. She worried about what to tell her 12-year-old son: “He doesn't know anything.” She thought she would need some help figuring out how to tell him. We sat quietly for some more time and the silence was not awkward. When I got up to leave she asked when I might come back. I left the room and leaned against the wall in the busy hallway and felt my heart, tight and pinched, in my chest.

I sat down to write my note later that afternoon. How could I make sense of the irony of my charge: to help her with ensuring that she “got it.” I had stumbled in on a five-minute exchange with the notary and at once I saw what was previously hidden. I happened to sit in that chair with a pen in my hand at the hour in which she would demonstrate a crystal clear understanding of her prognosis. Her splotchy face displayed her need and ability to compartmentalize as a coping mechanism. My note needed to convey to her team what we have both the privilege and horror of witnessing in palliative care. I thought back to my wise mentors at Massachusetts General Hospital who write papers about these very topics. I remembered discussions and role-plays and imagined them culling their years of experiences into their published work and into their teaching methodologies. I reread some of their work and appreciated a framework to help me manage my own misguided and defensive anger at the thought that this woman “just didn't get it.” Here's part of my note:

Debbie is actively engaged in activities indicating she has an excellent and profound understanding of her prognosis. She is planning for her death: “I don't want my kids to see me dying in my bed.” She is arranging for their well-being and surrogacy after her death by acknowledging that they will need guardianship. She describes her situation: “Everybody walks by or talks to me and thinks I am so strong and doing so well. I am doing what I need to do but I'm not doing well.” She explains that she feels she needs to stay strong and live day to day. Coping with her terminality in this way is a healthy way to periodically integrate her understanding of her death without becoming immersed in it every second. Her medical team must be able to tolerate her having periods of time in which she does not want to or cannot engage in discussions of her terminality. When asked about her hopes, she thinks carefully and answers simply: “I just want my kids to be okay. That's all. And I don't want to cry.”

I see her. I see her doing her very best in a very bad circumstance. She understands, and of course, she doesn't. She fights for control when she can, and gives up when she can't. She holds back her tears when she needs to. She complains about little nuisances of life and her children like we all do. She doubts her decisions, puts up fronts, and makes questionable choices. She defends herself. She laughs and refuses to eat one more serving of rice and beans.

Doing all these things is how we all live, and for now, that is what she is doing.