The scene resembles a three-ring circus: an oncologist bad-mouthing a local quack for offering alternative cancer cures that encourage false hope; a palliative care professional criticizing an oncologist at another institution for prescribing futile treatments that give patients false hope; and a terminally ill patient insisting there is no such thing as false hope.
Given the vital role of hope in decision-making, I'd like to share my understanding of the definition and implications of a commonly used phrase—false hope—that apparently means different things to different people.
Hope and False Hope
One useful definition of hope is “a pleasurable feeling associated with a belief that a future good can happen.” Note two key features of this definition: Hope is a feeling associated with a belief, and hope is experienced in the present but linked to the future. Since both the feeling and the belief are positive, the power of hope lies in its ability to bring comfort today and spur action that shapes tomorrow.
To detect false hope, scrutinize the foundation of patients' beliefs regarding their chance for the desired outcome. Patients who anchor their belief in facts nurture healthy, life-enhancing hope. In contrast, those who base their belief on inaccurate information or wishful thinking foster false hope.
As a non-medical example, imagine I splay out a full deck of cards face down and promise to give you 50 bucks if you pick a queen. Oblige me and pull one card, knowing your chance of success is ~8%. If you experience a pleasurable feeling in association with your belief that turning over the card might make you richer, you have hope.
Now keep the setup the same, except I inform you that I've removed all four queens. Once again oblige me by pulling a card from the deck. If you're not convinced of my claim about the missing queens, you can feel hopeful of winning the cash. Your subjective experience of hope may feel exactly the same as before. But since your pleasurable feeling is linked to an erroneous belief, this time you are experiencing false hope.
The Risk-Benefit Ratio of False Hope
Patients and their loved ones may dismiss this card game analogy, arguing that patients' chance of recovery is not zero, even after standard therapies fail. They may insist the hope of a modern-day miracle has a healing effect, lifting them from despair no matter how unlikely the recovery.
They're right, of course. After standard therapies fail, additional treatment may lead to unexpected and inexplicable recoveries—even if exceedingly rare and/or due to the placebo effect. And they're right that hope for recovery can lift anyone's spirits.
But these arguments miss the point, namely, that false hope can lead patients away from wise treatment decisions that reflect patients' values and priorities. Thus false hope can strip patients of dignity, meaningfulness, comfort and joy that are possible at the end of life.
For example, patients who choose treatment with little (if any) benefit must endure needle sticks, side effects, complications, inconveniences and hospitalizations that disrupt and distract from loving relationships and joyful moments. Patients who stay focused on recovery may delay difficult conversations and avoid making necessary preparations, oftentimes until it's too late. Perhaps worst of all, hope for recovery against all odds can pave the way for heartbreakingly lonely and undignified final days, with patients isolated by ICU paraphernalia instead of caressed by loved ones.
Obstacles to Hopeful Beliefs
Clinicians influence what patients hope for and how hopeful they feel, a responsibility that carries obligations to steer patients away from false hope.
After standard therapies fail, you can lay the foundation for reality-based beliefs about recovery. How? By addressing the fears and misconceptions that often distort patients' perception of the risks and benefits not only of hospice, but also of off-label, investigational and alternative cancer therapies.
Studies support the concern that patients may unconsciously exaggerate the efficacy of salvage treatments and investigational therapies. If a clinician says, “This treatment works in only 1 out of 10,000 patients and extends survival by, at best, three months,” the patient may only hear, “This treatment works.”
Patients may unconsciously downplay the adverse effects of low-benefit treatment, leaning on a well-worn quip—“It beats the alternative”—that was highly adaptive when recovery was expected.
Cognitive dissonance can create problems, too. With high-tech rescues from the brink of death an everyday occurrence in oncology, your patients may understand your declaration that the end is now in sight. But they may not believe it. Not yet.
Last but not least, when diagnosed with terminal disease, any treatment that promises recovery forces patients to wrestle with their hard-wired instinct to survive. Rejecting such treatments, even ridiculous ones, takes courage and willpower.
The Clinician's Role
You can protect patients from the intoxicating lure of false hope by doing what you've always done: Help patients make informed and autonomous decisions. After standard treatments fail…
* Reassure patients of your continued commitment to help them live as long and well as possible.
* Reaffirm the goal of making wise treatment decisions that honor patients' values and priorities.
* Acknowledge the many obstacles to choosing well, including the instinct to survive and the appeal of more therapy.
* Share the prognosis in a way that opens the door to hope, as discussed in earlier columns (If—Not When; Stopping Time).
* Acknowledge the grief associated with letting go of hope for treatment-related recovery.
* Provide the foundation for reality-based beliefs, such as the fact that hospice care focuses on living, optimizes comfort and dignity, and often lengthens life. And the fact that making end-of-life decisions can lower stress for patients and their loved ones.
It matters less what you say than what patients hear. Nowhere is this adage more compelling than after standard therapies fail and the lure of false hope gains strength. Compassion begins with helping patients understand the truth about their condition, options, and hopes. Modern medicine has no place for false hope—a hope that always disappoints in the end.