What Do You Say When She Is No Longer Living With Cancer

DOI: 10.1200/JCO.2015.63.4105 Today, I held the hand of a 37-year-old woman who I knew was dying. Yesterday, we had spoken of second-line chemotherapy, weighing the risks against the chance that it might slow the malevolent progression of her sarcoma. Today, I entered her room knowing that I had to change my story, revise the plan, darken the prognosis, look in her eyes, hold her hand, probably cry. In the past 24 hours, the urine had stopped flowing and the jaundice had arrived. Her body had made that awful transition from living with cancer to dying of it. I entered the room, heavy with the burden of knowing too much. “How do you do what you do?” People ask me this all of the time at dinner parties or school pickup. There is no party-ready answer. It is no different than trying to explain the pathophysiology of multisystem organ failure to a layperson; trying to explain how oncologists willingly care for people who die is just too complicated. But, sometimes, a student or a fellow is candid and courageous enough to ask me, truly seeking an answer—how do you tell a patient that she is dying? First, sit down. Rearrange the furniture if you need to. Be on eye level. Make a physical connection: hold a hand or touch the bed. Doing so says that you are courageous enough to share her suffering for a little while. Second, invite her support into this intimate space: ask her mother to be at the foot of the bed and let her sit down, call dad on the mobile phone and put him on speaker. Next, set an agenda for the conversation (I want to talk about what the labs are telling us is happening to your body, about what choices we have now about what to do for your cancer, and about what might happen in the coming weeks... Is that okay with you?). Read their faces, check for resistance, for fear, for anxiety, for trust. Then talk. Talk about how the tests are showing that the cancer isn’t allowing her organs to work properly, then talk about how the chemotherapy might hasten the damage, might do more harm than good. Talk about how her days are likely to be stronger and safer and more gratifying without the adverse effects and risks of chemotherapy. Introduce the concept of home hospice by saying that it is a route to having skilled nursing support at home, with the added benefit of emotional and spiritual support for her and for her family. Answer all of her questions honestly, patiently, compassionately, truthfully. Ask her mom and dad to voice their questions. Answer them, even if it is territory that you have covered many times before. (What about a clinical trial? What about the oral chemotherapy I read about? Those are the relatively easy ones: “Unfortunately, there are still limits to what medicine can do for advanced cancers; the chance that the oral chemotherapy will control the disease is low, and the risks when the bowels are blocked like this are too high.”) Listen to the hard questions; don’t deflect them (How long do I have? Why is this happening to me?). For the “how long” question, I check to see that she is truly seeking an answer to that question. I admit that I cannot give an exact time; I reassure her that we will keep her from suffering. If she does want my estimate of a time frame, then I do my best: I say that, although I could be wrong, I would expect her time is “probably measured in weeks, not months.” When this answer makes her cry, I hold her hand tighter and acknowledge how awful this truth is. I do my best with the “why” question. I tell her again that we don’t know why any single individual gets a cancer, nor why the same cancer may be indolent in one and relentless in another. I remind her that nothing she has done in her life caused the cancer. I acknowledge how very unsatisfying my answer is. I say that I am sorry. I don’t know how long this conversation takes. On the days when this is the necessary task, one attends not to the time, only to the patient. When all of the most difficult items on the agenda have been addressed, I turn the conversation back to the things we can do for her right now: arrange for the case manager to discuss the logistics of home hospice, order what hardware they would like at home (eg, hospital bed, bedside commode, shower chair), adjust the pain medication dosing, make arrangements for the home patient-controlled analgesia. Ask again for questions or concerns, first from her, then from her family. Hold still and listen. My patient breaks the silence and says “It’s okay, thank you, doctor, it’s okay,” as she blinks a JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 33 NUMBER 31 NOVEMBER 1 2015