Does a patient's hope matter? Yes, of course. A more interesting question is, "What should a patient hope for?"
As a practicing internist, I knew patients' hope mattered. What I didn't realize until a few years into my own survivorship was the importance of investing only in healing hopes—specific hopes that help patients get good care and live as fully as possible. My understanding of which hopes are healing began with a definition of hope and an exploration of mechanisms by which hope might help patients.
Hope is a pleasant feeling linked to a belief that the desired outcome could happen. As a cancer patient, I assure you the pleasantness counts for something. Like honey added to a bitter mix, hope takes the edge off fear, sadness, and other unpleasant emotions of survivorship.
Hope helps patients feel better. Does it help them get better? It's likely that hope, along with expectation, contributes to the placebo effect, self-healing significant enough to require placebo controls in clinical trials.
For the sake of argument, let's assume a patient's hope has no direct effect on healing. Still, I believe it plays a vital role in physical well-being. Here's how: Hope motivates patients to action. I can't imagine undergoing chemo without hope that the treatment can help. Hope also helps patients wait when the outcome is totally beyond their control. Hope stirs the needed fortitude and patience, and it reins in the desire to do something when the doctor's prescription is tincture of time.
The power of hope to help me act and wait earns it a respected place in my therapeutic regimen. Like conventional therapies, hope can help me or harm me, depending on what I am hoping for. How can I determine if a hope is healing? Without a hope-o-meter and in search of a proxy gauge, I found a clue in the fact that hope arises only in settings of uncertainty about outcomes that matter.
Think about what you hope for each day. You don't hope the sun will rise tomorrow, because that's the most certain prediction in your universe. You don't hope my grandson will sleep through the night, because the outcome doesn't affect your life. In contrast, if you're driving to an appointment and running late, you hope the traffic is moving well. With every patient encounter, you hope to say the right things and hope your prescriptions will yield the best possible outcome.
Because hope arises only in settings of uncertainty, it follows that hope is healing if, in times of uncertainty, it helps in health-promoting ways. My hope-o-meter took the form of a question: "Is this hope motivating me to proper action and/or helping me wait?"
As a scientist, it's second nature for me to ensure my facts are correct. Doing so protects me from false hope—hope based on misinformation or misguided beliefs—that can steer me away from proper action (see False Hope, Dec. 25, 2012, Oncology Times).
My surprise discovery was that many realistic hopes are not healing. Consider hope for good news, a common hope of patients undergoing diagnostic tests. For years, I'd hoped for good news, a hope reinforced by everyone who told me they, too, were hoping for good news. Over time, I realized how little that hope helped me through the uncertainty. If anything, it exacerbated my sense of impotence and vulnerability while lying in the CT scanner and while waiting for results. After all, my hope wasn't going to change what the tests showed. And hope for good news stirred fear of future disappointment, an unpleasant feeling that offset the pleasantness of my hope.
If hope for good news doesn't help with the uncertainty, what should I hope for? Logic tells me I should hope for the news that can best help me, which is, of course, accurate news. My evaluations have been remarkably less stressful since adopting "hope for accurate news" as my go-to hope. That hope works by giving me a sense of purpose as I hold still during scans; by fostering patience, as I envision my physicians carefully reviewing the results; by stirring confidence that the news, whatever it is, will help me; and by preparing me for any news.
My life changed for the better once I began assessing my hopes, investing only in healing hopes, and letting realistic hopes drift into the background if they weren't helping.
Over the years, I've developed a repertoire of hopes tailored for specific circumstances. Most of my healing hopes narrow the time frame of uncertainty. This increases the frequency of realized hopes, which generates an uplifting feeling that nurtures hopefulness. And all other things being equal, the disappointment of a dashed short-term hope is less than if I'd been hoping for a long time.
In addition, most of my healing hopes offer me a role in bringing them to fruition. This focuses my attention on changing the things I can change. Serenity replaces anxiety as each action I take to increase the chance of the desired outcome gives me another reason to hope for the best.
As one last example, one of my greatest hopes is that my current remission lasts. Yet, this hope is rarely on my mind. I'm too preoccupied with other hopes, such as my hope of giving my body the best chance to stay healthy, a hope that motivates me to eat healthful foods when I have no appetite and to exercise when I feel fatigued. Because I can realize this hope often, this hope helps me feel better as it helps me get better. It's a healing hope that helps me manage the uncertainty about my future health.
Patients need hope. Guide them to realistic hopes that help them take proper action and help them wait. Encourage them to focus on specific hopes that help them through the uncertainty. Then support whatever hopes help your patients get good care and live as fully as possible.
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