You did a terrific job with a tough situation: Your patients clearly understand that no curative treatments are available, and they're on board with expectant management. Now they face their next challenge: moving on. How might clinicians help patients adjust to palliative expectant management and enjoy its benefits?
To ensure we're talking about the same thing, I'm referring to the category of treatment approaches defined by delaying anticancer therapy without jeopardizing patients' long-term outcome. And I'm limiting the discussion to the palliative setting, where expectant management includes both watch and wait and active surveillance.
The differences between those two are summarized in the table as if they are distinct entities, even though I see them as two ends of a spectrum. (For a discussion of expectant management with curative intent, see my "Active Surveillance and Cure" column (9/10/15 issue).
What makes expectant management so tough for some patients? The waiting. We all know how excruciating waiting can be, especially if waiting for something unpleasant. Waiting intensifies any feelings of vulnerability and helplessness. If patients are waiting for worsening test results or symptoms, or waiting for you to pull the trigger on treatment, how can they possibly enjoy the benefits of delaying treatment?
Immediate threats generally stir more anxiety than fears about future troubles. So anything you can do to decrease your patients' sense of imminent danger should help.
One way is to avoid the adjective "incurable." For sure, the definitiveness of "incurable cancer" offers the advantage of leaving little room for newly diagnosed patients to mistakenly think the goal of treatment is cure. But that same definitiveness can create an overwhelming sense of doom.
Patients may leave your office thinking "I have incurable cancer" and arrive home thinking "I'm dying." "Incurable" upended their expectation of living in the future. No matter how slow-growing or small-volume their cancer, and no matter how fit they felt before your pronouncement, they suddenly feel weak and lightheaded, convinced their time is up.
If you avoid "incurable," are you misleading by omission? Will you risk a terrible misunderstanding about the goals of treatment? No, not as long as patients hear the truth, as I did at my first office visit. I'd asked my oncologist if my indolent lymphoma was curable. His answer began with three hopeful truths: "Your cancer is very treatable. Patients can do well for long periods with treatment. New treatments are coming down the pike." That tryptic of treatability formed the bedrock of my changed world, a foundation that grounded me when I learned the fourth truth: I had no curative treatment options.
Treatability became my touchstone. Thereafter when anyone said I had incurable cancer, I tacked on the inferred concluding phrase that needed to be said aloud: "with current therapies." It was only a short hop from "My cancer is incurable with current therapies" to the truth that helped me most: "My cancer is not incurable; it's a type for which researchers are working toward a cure."
Shifting the locus of the problem from my own tumors to the medical community's shortfall in therapies calmed me like a benzo. How? Well, I knew that over time my cancer would not change to a less malignant form. But over time my treatment options could change, and only for the better. That possibility gave me hope for tomorrow that calmed my anxiety.
Even if you call such cancers "treatable," you still have to tell patients their treatment options are palliative, and not curative. It's a delicate task since so many people equate "palliative" with hospice and immediately conjure deathbed scenes. For some patients, hearing you call it "palliative anti-cancer therapies" may sound more optimistic and proactive than "palliative therapies," since you've linked "palliative" with the power and hope associated with antineoplastics. And you may come across circumstances where it helps to mention that treatments for many chronic diseases like congestive heart failure are also palliative.
A different tact is to focus on the "expectant" component of this palliative approach and to reframe it: "Expectant means anticipating something pleasant. With palliative expectant management, we are not waiting for problems. Rather, we are avoiding the problems of overtreatment and anticipating the best quality life for as long as possible."
Engage the power of social comparison to further elevate the benefit of delaying treatment. At my support group, I saw and experienced personally how patients can feel better about their situation if they have options others don't-even frightening options.
In this regard, expectant management looks really good: "Other patients need immediate treatment. Your cancer poses no immediate threats, so you can do expectant management." Capitalizing on how you are saving treatment options for future use reinforces patients' sense of having a safety net.
All these efforts go only so far in helping patients who still feel like they're waiting. As a patient, I found the months of "watch and wait" after being diagnosed with my third recurrence incredibly unsettling. We were waiting, hoping a retreatment trial would open. Not knowing how fast my cancer was growing, "wait and see" was "wait and worry" until a Eureka moment when I defiantly decided that I would never wait again. "No 'wait and see' for me! I'm going to live and see."
With that in mind, maybe the best way to help patients prepare for palliative expectant management is to tap into the mission: using the science and art of medicine to help patients live their best life. "Expectant management enables us to personalize the timing of your treatments-not too soon and not too late. It's important you don't feel like you're waiting for problems. Your job is to move on and live your life as fully as possible today, tomorrow, and every day."