But what if uncertainty causes your patient to delay needed chemotherapy or avoid checkups? What if your patient yearns for a cure at any price or begins each day feeling for lymph nodes? Here in Part III, I'll explore the role hope plays in managing patients' reactions to uncertainty.
Envisioning the Future
Whenever I think back to the week of my first recurrence, I smell paint pens. Between doctor visits, I sat at the kitchen table with my 3-, 5-, and 7-year-olds, taking requests as I hunched over their cork bulletin boards. Painting ballet shoes and soccer balls distracted me from the punishing sense of uncertainty about what lay ahead.
Busywork can offer patients needed respite from the burden of uncertainty. But like morphine for an acute abdomen, hiding from tomorrow is a short-term fix. To get good care and live fully, each patient needs a life-affirming connection with the future.
Envisioning the future is a defining feature of humanity. Our relationship with tomorrow drives our emotions and actions today. All our planning and striving secure our identity as mature individuals as we choose when to act and when to wait. It's not just that we can think and talk about tomorrow; we need to.
Problems arise if a patient's vision of tomorrow is painted in shades of fear, sadness, pain and helplessness. Your sound advice and heartfelt encouragement may fall on deaf ears. What can you do? Help your patient find hope that heals.
Hope is a complex phenomenon involving cognition and emotions. One useful definition, derived from the wisdom and philosophic literatures, describes hope as a pleasurable feeling linked to beliefs about a future pleasurable event or circumstance.
Since hope is a positive emotion experienced in the present, hope can mollify a patient's current distress. And since hope is linked to a positive future experience, hope influences—or even defines—a patient's projections about tomorrow in an uplifting way.
Success stories can generate hope by putting a face and name to the desired outcome. Favorable statistics can generate hope by boosting a patient's confidence in achieving that outcome. Anything that links a patient's present to the future in positive ways can generate hope.
Contrary to what many people assume, not all hope is healing. Let's say a patient in remission discovers a hard irregularity under an old surgical scar. Hoping the lump will disappear spontaneously conjures a mental image that diminishes the fear of recurrence and helps the patient get through the day—a good thing. But if this hope encourages the patient to wait instead of complying with recommended diagnostics, the overall effect is harmful.
Since good care depends on knowing the cause of the lump, most patients are better served by hoping for accurate news. As explained in my column on “Real Good News” in the 9/25/11 issue, this hope can both motivate and comfort the patient through the rigamarole of evaluation.
Let's say a patient is doing fine now but has a poor long-term prognosis. Which hope helps the patient deal with the uncertainty? It depends.
In my case, my reactions to the uncertainty about long-term survival were dominated by fear for my children. Hoping and praying to see them grow to adulthood didn't help. If anything, this hope made me more anxious—waiting helplessly while trying to banish thoughts of my children without me.
Fortunately, a colleague led me to face my fear, knowing I'd realize that, obviously, my children would not end up wearing rags and selling pencils on a street corner. The exercise led me to put a more healing hope at the top of my list: the hope my children would grow up healthy and happy, whatever happened with me.
This hope mobilized me to address the what ifs, after which they drifted into the background. This hope comforted me when I saw other adults nurture my children. This hope opened my eyes to the everyday opportunities to teach my children the skills and values I'd want to teach them if I had all the time in the world. As long as my future health remained uncertain, this hope connected me to the future in life-affirming ways, thus helping me find some happiness.
For other patients, the hope best suited for the top of their list might revolve around a short-term project, decreased pain, meaningful good-byes, or whichever hope helps them get good care and live as fully as possible within the constraints of illness.
People can disagree about which hopes are healing for a particular individual. I knew a woman who sustained to her dying breath the hope for recovery, even forbidding her husband to say good-bye. Some people argue this hope was unhealthy because it kept her from dealing with her dying and burdened her loved ones with complicated grief. Others maintain it was healthy because it comforted her to the end—and loving someone means honoring his or her wishes, even if painful to do so.
The Clinician's Role
At every visit, your words and actions shape your patients' reactions to uncertainty. Your tests and treatments reassure them by decreasing uncertainty and optimizing the odds for recovery. And your attention to hope helps them accept the things they cannot change and change the things they can.
For patients frightened by a new diagnosis, encourage them to focus on the hope of getting through the evaluation and making wise decisions about treatment, work and home.
For patients struggling with treatment or recovery, encourage them to focus on the hope of improving health over time—and finding some happiness despite illness.
For patients whose treatment fails them, highlight the hope of other treatments.
For patients who have exhausted all treatment options, focus on the hopes of avoiding futile interventions, feeling better off-treatment and embracing those joys still possible. Open the door to hope for an unexpected and inexplicable recovery, and then honor whatever level of hope your patient feels.
Medicine is an art based on science. Whenever you prescribe therapies, also guide your patients to hope—to relate to the future in life-enhancing ways. Even when hope cannot bring serenity, it can put boundaries around the haunting possibilities and motivate patients to live until they die.
In the final installment of this series, I'll provide a patient handout on managing patients' reactions to uncertainty.© 2011 Lippincott Williams & Wilkins, Inc.
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