When a patient plays out all possible scenarios of a cancer diagnosis is that gloom and doom? If it gives patients and family a chance to anticipate what might happen and to practice how to react, how does that impact communication? What is your response when a patient wants to explore all the possible outcomes of their diagnosis? Do you feel inclined to discourage this? Does it make you uncomfortable?
“Rosie, you can’t think that way. You have to stay positive.”
I watched as Rosie’s mother arranged the blankets, gently tucking them around her legs and smoothing a hand across the top. I pictured her doing that when Rosie was a baby, and imagined she had tucked Rosie in at bedtime and nap time and whenever she was sick. Nevermind that Rosie was nearly 50 and her mother was in her 70s, this was her daughter and she was still mothering her. Rosie had colorectal cancer, and her surgery revealed it had already metastasized to her liver. She needed to start chemo as soon as she had sufficiently healed from surgery. Earlier that day Rosie told her bedside nurse, “I know this is a death sentence. I’ll go through all the chemo and stuff but eventually this is what I am going to die from.” Her nurse didn’t agree or disagree. Instead, she let her talk without falsely trying to cheer her up. Rosie had met with a medical oncologist, and told her nurse, “He said because it is already in my liver that he can’t cure it. The best we can do is slow it down.”
Rosie’s mother arrived before her nurse had a chance to respond.
“You look better today,” her mom said then she bustled around the room, straightening the tray table, the bed, Rosie’s hanging clothes. She was in constant motion, as if her activity could change the news about Rosie’s cancer, as if an orderly room could alter the disorder of a daughter dying before her mother. Her hands trembled as she worked. “Did you eat?” She asked Rosie. “You have to eat if you are going to get better.”
Rosie took her mother’s hand. “I don’t have much appetite. Sorry.”
“Don’t be sorry. You just do what the doctor tells you and you’ll get better.”
“Mom, I’m never going to get better, not really.”
Her mother shook her head, “Rosie, you can’t think that way. You have to stay positive.”
We have all heard a version of this conversation. An interesting attitude amongst patient’s friends and families, and health care workers, is that the patient must maintain a positive attitude. We rally around like a band of cheerful cheerleaders hanging on to the pressured notion that as long as we stay positive, as long as we say there is a chance for recovery, everything will be okay. We tie that in to the outcome we wish for. The implied message is: If you are positive, you will get better; if you are negative, you will not. By doing this we inadvertently make the patient the bearer of this unbearable burden: poor attitude means poor prognosis and by not staying positive then a poor outcome will be your fault. The idea of allowing the patient to play out all scenarios is unacceptable as it may be categorized as negative or morbid.
Anecdotally I think most of us who deal with patients with cancer have seen a benefit from cultivating positivity, as long as it is not at the expense of a true evaluation of reality. In other words, false positive is what it says it is: false. Patients’ families and health care workers usually know that. But the truth makes us uncomfortable. When we say things like, “You’ll get better, “or “you are a fighter,” we block ourselves from an important conversation. Our discomfort prevents the patient from openly examining their situation.
A quick Google search on positive attitude and positive outcome lists many links. But that isn’t the point of this column. The purpose is not to debate the impact of positive attitude; rather it is to address the tendency to thwart discussion of any possible outcome because we associate that with a negative attitude. When it comes to discussing treatment, even something experimental, we are more than willing to discuss the pros and cons with patients or families. But when the conversation shifts to asking about what will happen if chemotherapy does not work or what happens if the trial drug fails, there can be a polite silence.
What happens if we don’t allow our patients to play it out all the way, to say, “What comes next?” What happens if we try to keep them from working their way all the way through that. In the book Sacred Passage, Margaret Soberly talks about death denial, but she also talks about death anxiety.1 Anxiety about the unknown makes many of us anxious, and to keep that discomfort at bay, we avoid the honest conversation.
Rosie’s nurse went back into Rosie’s room after her mother left. She opened up the conversation with a simple statement, “This must be a scary time for you.” She didn’t have to say much else after that. Rosie filled the room with questions but also with scenarios that she explored by playing them out loud. Her nurse was able to correct the incorrect details Rosie imagined while still allowing her to think through all of her best and worst imaginings.
We work hard to reach a destination, we plan for it and we expect it. Any discussion of alternate plans or detours and we want to throw up a road block. But the detour is important. The detours remind us to slow down and listen. The detour becomes the new destination.
Ann Brady is the symptom management care coordinator at the Cancer Center, Huntington Hospital, Pasadena, California.
1. Coberly, M. Sacred Passage How to Provide Fearless Compassionate Care for the Dying. Boston, MA: Shambhala Publications; 2003.