A cancer diagnosis brings with it many challenges and much suffering. Dealing with physical symptoms from the cancer, from the treatment of the cancer, or both is difficult enough. And yet there is more. Cancer is greedy. It impacts a person physically, and it impacts the person emotionally and spiritually. One of the more complicated effects is that it takes away a person’s control over their own decision making. Sometimes I wonder if that is why there are patients who, once they hear their diagnosis, are lost to follow up. They walk away because it is a way to exercise choice, something they have control over when everything is out of control.
Throughout treatment there are hundreds of times a patient is ostensibly given a choice: surgery or no surgery, chemo or no chemo, medication for pain or nausea or no medication. Yet what kind of choices are they truly when the patient and loved ones have been forced into a place they do not want to be? Throughout the trajectory of their treatment, patients have few options. NCCN guidelines are reviewed, strategies for managing symptoms are explained. But I would argue that treatment recommendations are not true options to make a decision over. “It’s up to you,” we say. But really, is it? Who wants to choose between two bad possibilities? And so, our patients get on board. Some are fully engaged; most are reasonably compliant. Some are not. Some are pleasant and easy to work with, some are grumpy or whiny and present a challenge in managing their care. But most, at least initially, will choose what is recommended, then ask for accommodations. Fear is a terrific motivator.
Philip had a polyp that was found during a routine colonoscopy. In retrospect, he admitted he’d been having some mild symptoms but nothing that alarmed him. After all, he had rationalized, he was getting older and likely the changes he noted were from that. But the polyp that was discovered was too large to remove, and the biopsy indicated a malignancy. He was sent to a colorectal surgeon and after some additional diagnostic testing, the surgeon recommended surgical excision. The proposed surgery was a big operation, and Philip listened carefully as it was explained to him.
“Do you have any questions?” the surgeon asked.
“What if I don’t have the surgery?”
“It will keep growing. Eventually it will cause a blockage.”
Philip paused, and then with a wry smile, said to the surgeon, “So, I really don’t have a choice, do I?”
The room was completely silent for a moment until the surgeon said, “Not really.”
Philip is a pragmatic sort of guy. He saw the irony of being caught between two terrible choices. He was able to say he wanted the surgery, though it was a decision by default.
What happens when a patient or family is presented with two options and rather than making a definitive choice, they get stuck? Not a fight-or-flight reaction, instead they freeze in place. Essentially, they become paralyzed and unable to make a decision. I most often see this when a patient has a recurrence or when their treatment does not produce the hoped-for response. They have done everything they were expected to do and now face a decision to continue in spite of a diminishing margin of return or to stop. Their choices have narrowed into two equally unpalatable options.
A patient named Mary said, “If I don’t continue chemo, it is like I am giving up. How can I give up when I’ve fought for so long?”
Frank said, “Everyone I know is praying for a miracle. I don’t want to disappoint them.”
Alfredo said, “I really want to stop treatment but my doctor says she has another drug for me to try. What should I do?”