Patients with advanced disease may ask themselves, "How will I know when it's time to stop fighting?" They're thinking-or worrying-about that life-and-death decision, one they expect to make sooner or later. Some of them summon the nerve to ask you for an answer. What do you say?
If your back pocket is bulging with treatment options, you could encourage patients to stay focused on the present: We're not near that situation; you don't need to think about that now. Such reassurance may be exactly what some patients need to relieve their worry. For other patients, that non-answer shudders like a slammed door. Thereafter, they'll worry in silence, unless you follow up with an open invitation: We can talk about it anytime, even now. Just let me know when it's best for you.
If they want to talk, consider exploring the fears behind their question. What are the hardest parts for you about the idea of stopping fighting? Their answers will help you address their current concerns, as well as advocate for them in the future. You'll know if they're worried about suffering by fighting too long. Or about quitting too soon and missing a lifesaving treatment. For all you know, they're bombarded by messages to keep fighting. Or they fear disappointing you. Then again, their asking about when it's time to stop fighting may reflect nothing more than curiosity about how people know.
Reason dictates patients stop fighting when the drawbacks of continuing treatments outweigh the benefits. That practical answer risks missing the mark for patients who've adapted to life in the shadow of unfavorable odds. To keep hope alive, they've adopted a belief system based on, "While there's life, there's hope," which changes the calculation and justifies fighting to the last breath.
Unfortunately, if patients equate "fighting cancer" with choosing life, they may equate "stopping fighting" with choosing death. That misguided conclusion, even if only subconscious, must be put to rest. Patients who choose to stop treatment are not choosing to die. They are choosing the best option for living their best life under the circumstances.
Reframing "fighting" may help, too, especially if you first affirm patients' self-image as fighters-Since our first meeting, you've proven you're a fighter. Nothing can ever change that. You can model a "fighter's" perception of stopping treatment: If we ever don't have good treatment options-and I hope that never happens-our fight will become a different kind of battle. You can describe fighting tooth-and-nail to help their body feel as well as possible for as long as possible, which includes resisting the urge to do interventions that only make things worse. You can talk about fighting together to make every day the best it can be.
Another approach is to take a patients' question about stopping the fighting as an opening to pivot away from battle imagery, provided you're prepared with an alternative metaphor that enables patients to save face while leaving the battlefield. I needed such a metaphor when first diagnosed, since I was never one to battle. For years, I imagined my survivorship as a sort of maze, like the labyrinth at Versailles, each recurrence a dead end. My ability to change direction and choose one of the remaining possible paths nourished my hope of finding my way out of the maze to the open space marked "long life."
Years ago, the maze metaphor stopped working after some friends died, buried mid-maze as if they'd chosen the wrong path. That notion clashed with my belief that triumph over cancer is measured by how we live, and not by how long. In search of a metaphor that worked well throughout survivorship, I adopted a more Confucian notion of life, one consistent with many religions and philosophies of life.
Each of us walks one life path that's uniquely our own. Unable to see beyond our present situation, we use our knowledge, experience, and gut feelings to choose how to take each next step. Whether we envision life as uncovering our path or creating our path, we're striving to respond to challenges in healthy ways. Poor responses cause us to lose our way. As the end draws near, it's not a matter of choosing whether to fight, but choosing the best of many possible responses, one that helps us stay on our path and not lose our way.
Asking patients about their goals of care helps them choose a path in keeping with who they are. Without getting too philosophical, you could explain to patients, A school of thought teaches that each of us walks a unique path in life. Our choices don't take us on one life path or another; our choices determine how we walk our singular path. You can build patients' confidence by explaining how, since you met, you have been striving to help them respond to each challenge in ways that help them walk their path. If someday treatment options run out, together you'll figure out the best response under the circumstances, one in keeping with their values.
If patients seem overwhelmed, remind them they've handled situations they probably couldn't imagine facing before their diagnosis. Also remind them the best response for certain situations becomes clear only when in the situation, and not before. Reassure them of your confidence they'll always do what's best for them.
In oncology, patients' discomforting questions often present opportunities for healing words. If patients ask how to know when it's time to stop fighting, you can explain...
We can talk about it any time you want.
We fight cancer many ways, not just with cancer treatments.
In some situations, it's not a matter of whether to fight, but of how best to respond.
Patients' questions about stopping fighting usually arise out of fear of suffering or dying. You help relieve their worry by transforming the question from one about dying to one about living as fully as possible each day.