Before he had cancer, Pete was a marathon runner. He loved the hard work and competition of running the long distance and proudly described himself as someone who never gave up. Never. Even going through chemo, he continued to run, saying, “I’m not going to let the cancer stop me,” which explained in part why he refused to accept his diagnosis. No way would he let cancer catch up to him. Never. I have seen many reactions at the end of life, but Pete’s surprised me. He had stage IV colon cancer. At 51, he was relatively young; his wife Mary was a few years younger. It had already been a long haul for them: chemo, surgery, more chemo, even an experimental treatment they had traveled out of town for. After all he’d been through, his prognosis shouldn’t have been a surprise. It seemed like he should have recognized the inevitability of the situation.
The intransigence of him holding on to an unrealistic outcome combined with his dedication to running made me think of Heartbreak Hill. Running any marathon is not easy, but the Boston Marathon has a reputation for being especially hard in part because of Heartbreak Hill. In the 26.2-mile race, Heartbreak Hill occurs after the 20-mile mark. By then the runners have expended a tremendous amount of energy; they experience what is called “hitting the wall” only to be faced by a one-mile stretch of a steady climb. True heartbreak. But a true marathoner keeps running.
Our palliative team knew Pete had exhausted all therapies and it was time for hospice. But when we tried to help Pete and his wife make plans for his final months, Mary told us, “He is going to do more chemo. He can beat this.” It was simple, but complex too. Her statement was a challenge for us: agree Pete had a chance of pulling through. There it was: the idea that he could get better in spite of what seemed obvious. Then she added the clincher, “We don’t want to hear any more negative talk.”
It would be easy to call it a case of denial, but it was more than that. There were layers beneath it. One thing was fundamental to all interactions; no one was to acknowledge the obvious. No one was to use the word death. Anyone who did was unwelcome. Pete and Mary were positive in their positivity. Together they were seduced by their own lie, refusing to believe Pete could lose his fight against cancer. United, they campaigned the medical oncologist for more chemo, getting him to agree to it if Pete was able to walk into the office. I am all for not giving up, yet the inability to see how advanced his cancer was kept them locked in silence. His unwillingness to give up when running a marathon was now an impediment. In a marathon, pushing through “the wall” is a way of reaching the finish line. Pete and Mary envisioned a finish line that did not exist, but they were unable to consider any alternative as he continued to fight an unwinnable battle.
The unspoken truth remained unspoken. I wanted to tell them it was possible to have a “good death.” But death was not in their vocabulary, so I kept it out of mine. My professional challenge was to negotiate the small space between the reality of his disease and the reality he and Mary could bear. Death is easier when everyone agrees it is coming. I tolerated that difficult space because I saw what they refused to see. Pete’s disease would follow its course with or without their approval. That was why I accepted their terms. I knew what was ahead of them better than they did. I had to stay my own course if I was going to be able to help them later. It wasn’t easy to stand by. In a way, it was my own smaller version of Heartbreak Hill. I had to figure out a way to tolerate the way they had chosen to cope. I had to hang in there.
As the weeks passed we saw Pete in our outpatient clinic. The chemo devastated his already weak body. Initially, he held on to his conviction, certain that with more time the chemo would do the job. We remained supportive, holding off on “negative talk,” but we continued to make overtures, little informational forays, “Do you think the chemo is helping or hurting?” and “What happens if the chemo doesn’t work? Can we talk about that?” As his body weakened, his resolve started to give way to reality. He began to waver. “This is way tougher than I thought it would be,” he told us.
In the article “Death, Time and the Theory of Relativity,” Harvey Max Chochinov, MD, talks about the value of time at the end of life, about how the quality of that time may increase closer to death.1 He also talks about the end of life treatments that are futile in their outcome of extending life yet have a value of extending time for the patient to find that quality time. The thing about Heartbreak Hill is that when the runner reaches the top of it the course dips down, and the runner is given a boost of energy. He or she still has a few miles to go, but the downhill gives them a break, the breathing room that was missing. I saw the value of the hill then. It took Pete climbing Heartbreak Hill before he was able to see that the end of his race had come. In fact, he could coast through to the end. It wasn’t until he climbed Heartbreak Hill that he was ready to say enough is enough. He needed the Hill to break him down, but it opened him up too. When he stopped fighting, he seemed to relax and find that quality time. On the top of that hill, he was able to draw a deep breath. The time he had, though short, became infused with full breaths and ease.
For me, the communication challenge in this case was about waiting and holding on until Pete and Mary caught up. The challenge was about listening until Pete and Mary were able to hear what we had to say. ONA
Ann Brady is the symptom management care coordinator at the Cancer Center, Huntington Hospital, Pasadena, California.
1. Chochinov HM. Death, time and the theory of relativity. J Pain Symptom Manage. 2011;42(3):460-463. doi:10.1016/j.jpainsymman.2010.12.001.