Few questions evoke physicians' discomfort like “Doctor, how much time do I have?” In oncology it's a common question that comes with the territory, forcing clinicians and patients to grapple with issues of trust, hope, uncertainty, disappointment, and grief.
Unlike questions about diagnostics or dosages, there's no easy answer to “How long?” A closer look at the challenge may lead to insights about healing responses.
“How long?” may come up during initial consultations. If the prognosis is excellent, a hopeful answer rolls off the tongue: “Your cancer is highly curable. We have every reason to expect you to live a full life.”
“How long?” also may come up as the end draws near. The oncologist's sad response can be welcome news to families reluctantly ready for their loved one's struggle to mercifully be over: “Not much longer. At most, a few days.”
These two settings at opposite ends of survivorship lend themselves to straightforward answers. Prognoses approach predictions; hope is aligned with expectation. In contrast, when it's not yet the end but the end is now in sight, clinicians find themselves at the nexus of science and art as they strive to be honest, hopeful, and helpful.
Why Patients Ask “How long?”
Some of your patients might ask “How long?” as a knee-jerk response after a lifetime of calculating and projecting how long this-or-that will take. As often happens in Western cultures, it may reflect a pattern of quantifying everything to provide a sense of control.
More likely, “How long?” is your cue to help patients manage their expectations after you've informed them that treatments can't save them. Whether you've just mapped out a course of palliative treatment or uttered the dreaded “H” word (hospice) for the first time, patients now look to you to prepare them for how long “it” will take—just as you have over the years when “it” was a bone marrow biopsy, test result, course of treatment, or period of recovery. They are probably looking to you for guidance on hopefulness, too: What can they hope for now?
Unless patients are literally on their deathbed, one answer is “Nobody knows. Nobody can predict your future.” It's tempting to embrace this uncertainty as the fulcrum on which patients can then seesaw between hope and acceptance until they find a balance that works well for them.
But withholding a prognosis breaks the essential bond of trust and can leave patients feeling confused, angry, or abandoned. As one patient cried to me, “Nobody knows? What am I supposed to do with that? I need some idea of how long.” And, indeed, clinicians have some idea. Between their understanding of the disease and their knowledge of the patient's course, clinicians can estimate “how long” better than anyone—ballpark numbers that patients have a right to know.
The Healing Power of a Prognosis
Clinicians may worry that articulating a prognosis will extinguish a patient's hope. The literature suggests otherwise. If anything, open communication about a poor prognosis may increase patients' sense of hope that motivates them toward achievable goals. To this end, answering “How long?” may be easier if clinicians focus on the healing power of a prognosis.
A prognosis is something people can wrap their mind around. Cold numbers that frame the remaining window of time can empower patients, literally giving them the maximum time to do what needs to be done and say what needs to be said.
From the moment patients leave your office, they may replay your words over and over to help them begin the existential task of accepting with their heart what they now know in their head.
A prognosis may be the only thing that motivates procrastinators to take care of their legal affairs. It won't make these tasks easier to do. But once completed, patients may feel the relief of having taken care of all the “what ifs.” This relief frees them to nourish hope of squeezing as many meaningful and joyful moments as they can into whatever time remains.
When you offer a prognosis, you also safeguard against dying patients looking back at this juncture with regret: “Had I known then what I know now, I would have done things differently.” Only by knowing and accepting the time frame can patients make wise decisions about work, school, finances, and end-of-life medical care.
A prognosis might serve patients who are dealing with fractured relationships. Whether offering—or being offered—an olive branch, everyone knowing time is short creates a sense of urgency that may facilitate forgiveness and loving reconnection before it's too late.
To experience the healing potential of a prognosis, patients first have to get through the initial shock, fear, and grief—a painful process that begins the moment after they ask, “How long?”
Compassion begins with embracing the opportunity to both shape how your patients learn the news and open the door for hope. “Most patients in similar circumstances live somewhere between [time range]. But nobody can predict how you will do. Unexpected recoveries happen. We can prepare for the likely outcome while still hoping for the best possible outcome.”
Then steel yourself for the next step. As one highly regarded colleague put it, “There comes a point in the discussion when time stands still and the oxygen is sucked out of the air. The doctor has stopped talking. The patient is absorbing the bad news with the hopeful spin that he or she can't yet hear. During the interminable moments that the patient is about to pass out, walk out, break down, or buck up, each doctor takes the measure of his or her own humanity.”
Honor the silence. Breathe. Wait.
Only then, reach out. “How can I help now? What concerns do you have about treatment, work, home, or money?” Such probing may open opportunities to refer patients to valuable resources for guidance and support.
Before concluding the visit, comfort your patient—and yourself—with the one thing you can guarantee: “Whatever happens, I will be here for you.”