View From the Other Side of the Stethoscope: Guiding Patients' Hopes

What is your top priority regarding patients' hopes? Ensuring they are realistic? Guiding patients to hopes that match the situation, with high hope in favorable situations and with little hope when the prognosis is poor? My training and continuing medical education didn't include sessions on “hope.” I learned the basics as a lymphoma patient dealing with recurrences and aftereffects. Wishing I'd known while in practice what I know now, I'll share a few ideas by telling the story of my decades-long efforts to find a useful definition of hope. The one I settled on is not definitive but offers an operational tool for fostering patients' hope. More than a decade into both my survivorship and career as a writer, I opened a blank Word document, eager to put to paper insights about hope that had dramatically improved my life as a patient. The surprise came when, expecting to dash off an introductory definition, I sat motionless like a statue, stymied. Shocked at my inability to define “hope” off the top of my head, I minimized Word to do a quick online grab. Conflicting definitions compelled me to dip into wisdom, philosophy, and theology literatures. The more I learned, the more complicated “hope” became. My head pounded with a growing list of factors shaping people's experience of this uniquely human emotion. Knowledge mattered, as did people's beliefs, perceptions, expectations, imagination, anticipation, faith, and more. My headache worsened while pondering how “I hope” differed from “we hope” and “a hope,” and how “having hope” differed from “hoping.” Our deficient language made me envious of Inuit Eskimos in Canada's Nunavik region. Igor Krupnik, an anthropologist who studied them between 2007 and 2008, recorded a dialect with at least 53 words for various types of snow. That nuanced vocabulary for the cold, white stuff gave the Eskimos a survival advantage, such as by distinguishing which snows were safe for sled travel. Clinical medicine desperately needs a nuanced vocabulary for hope because patients' survival sometimes rides on your ability to foster their hope or to help them let go of certain hopes. Certainly, personalized treatment recommendations hinge on an understanding of patients' hopes. Whatever the situation, compassionate care depends on it. Where to begin? The blinking cursor on my blank screen prompted me to take a stab at a working definition, knowing I could tweak it over time. Readings and discussions led me to include two elements—a feeling and a belief. For a long time, I qualified the feeling as pleasurable because popular literature classified hope as a “positive emotion.” The “pleasurable” created glitches, such as when patients describe feeling too afraid to hope for.... Some unease makes sense because hope arises only in settings of uncertainty about outcomes that matter, and humans generally don't like uncertainty—especially when the outcome matters. Hoping for one outcome while fearing another creates tension that heightens feelings of vulnerability and lack of control, in extreme cases triggering full-blown anxiety. Dropping the “pleasurable” and defining hope as a feeling linked to a belief that the desired outcome can happen smoothed the way for useful insights. In any situation where hope plays a role, this definition helps me understand why I think, feel, or behave in certain ways in response to challenges of survivorship. Those insights help me develop more productive responses. They also help me understand and support other patients. For clinicians, the two-criteria definition offers a lens for examining common dilemmas of patient care. For example, how do you respond to well-informed patients who don't follow through with recommendations regarding tests and therapies, referrals, or reporting symptoms in a timely manner? In my practice, if the stakes were low, I'd hammer home the facts once (or twice) and then let it go. If patients' actions jeopardized a good outcome, I'd keep hammering the facts at every visit. Either way, I felt I'd failed to communicate the information in ways needed to motivate proper action. I had communicated the facts well. My mistake was failing to address obstacles to acting on their knowledge. Often, patients are led astray by emotions—one of which is hope. For example, if patients don't report worrisome symptoms despite understanding and believing in the value of early diagnosis, consider exploring whether their inaction is driven by hope. Are they hoping to avoid upsetting news, needlesticks, medical bills, or upsetting loved ones? Maybe their feeling of relief while fulfilling an understandable but maladaptive hope (e.g., hope to avoid a false alarm) overrides the little voice in their head telling them the right thing to do. If so, a more effective approach might be refocusing patients' attention on their top-priority hopes (e.g., to optimize the outcome). Learning about patients' hopes and evaluating the impact of those hopes on patients' decisions, actions, and quality of life put you in a position to assess a key question: Are those hopes maladaptive or helpful for those individual patients? Are they helping patients get good care or leading them astray? Are they comforting and inspiring patients or causing additional distress? In my efforts to continue exploring and talking about hope, I now needed a qualifier to define a category of hopes that help and don't harm. “Healthy” worked well until I replaced it with “healing,” which worked better. The participle of the verb felt more active and less controversial, and the phrase (healing hope) benefited from connotations of fostering wholeness of body, mind, and spirit. Every patient needs healing hopes—hopes that help them make life the best it can be after a cancer diagnosis. Whether you mean to or not, your words and actions help determine what patients hope for and how much hope they feel. When dealing with patients harboring so-called false hopes or expressing hopes out of sync with their situations, explore the beliefs giving rise to those hopes. Give credit to the emotional lift of their hope. Then, if you see patients' hopes leading them astray or causing unnecessary distress, use scientific truths and a heart of compassion to guide and support patients' ability to cultivate hopes that help and don't harm. The art of medicine involves seeing opportunities in every patient encounter to foster healing hope. WENDY S. HARPHAM, MD, FACP, is an internist, cancer survivor, and author. Her books include Healing Hope—Through and Beyond Cancer, as well as Diagnosis Cancer, After Cancer, When a Parent Has Cancer, and Only 10 Seconds to Care: Help and Hope for Busy Clinicians. She lectures on “Healthy Survivorship” and “Healing Hope.” As she notes on her website (wendyharpham.com) and her blog (wendyharpham.com/blog/), her mission is to help others through the synergy of science and caring.Wendy S. Harpham, MD, FACP: Wendy S. Harpham, MD, FACP

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