What Do You Say When She Is No Longer Living With Cancer?
This is our work. Some days, it is inordinately sad, but, strangely, it is not depressing.... It is good, hard work, and, every day, I know that I am privileged to do it.
—Martee L. Hensley, MD, MSc
The ASCO Post is pleased to reproduce installments of the “Art of Oncology” as published previously in the Journal of Clinical Oncology (JCO). These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays.
To read more, visit http://jco.ascopubs.org/ and search “Art of Oncology.” 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
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 pick-up. 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 tear, squeezes my hand. I clasp her hand in both of mine and meet her eyes. I echo her “yes, it’s okay.” But it is not. It is not okay that her body won’t even let me try to bring her sarcoma under control for a little longer. It is not okay for her young and beautiful life to stop unfolding. It is not okay for parents to outlive their children. My tears are coming now, too, and she offers me one of her tissues—the patient taking care of the doctor for a moment. I stand up and smile gently. I tell her that I will always be her doctor and that my care and concern for her will never stop. She nods and smiles gently back, and I can tell that it is okay for me to end today’s visit. I walk outside the room and stop at the sink to wash my hands. Her mother comes up behind me, and, frankly, I brace to absorb the displaced anger or witness her raw despondency. But she just says, “Thank you, Doctor, thank you.” And, right then, my heart breaks for her.
This is our work. Some days, it is inordinately sad, but, strangely, it is not depressing. What I say at dinner parties is that there is an odd and deep satisfaction in it. We are willing to have these conversations, witness the suffering, share the journey, again and again, patient by patient, day after day. It is humane work that makes a difference in human lives. It is good, hard work, and, every day, I know that I am privileged to do it. ■