After a recent talk, one oncology fellow hangs back until everyone else has left the auditorium. As I gather my notes, he approaches: “Dr. Harpham, may I ask you a question?”
The young doctor's hesitation and furrowed brow telegraph that he isn't about to compliment my presentation. “Throughout your lecture, you kept emphasizing the importance of hope. Sometimes, can't hope be bad?”
“In what way?” I ask.
“We recently treated a middle-aged woman with advanced disease. The attending oncologist kept trying one treatment after another, reassuring the family, ‘I haven't given up hope.’”
“The patient died, and the family lashed out.”
Suddenly afraid he's maligned a respected physician, the oncology fellow quickly adds, “This guy is a superb physician: sharp and up-to-date, very dedicated, self-sacrificing, and caring.”
I nod, sensing his meaning: a physicians' physician, the “Go-to Doc” when others tell a patient, “Get things in order.”
The young man sounds agitated when he says, “All the nurses and housestaff knew she was dying.” He then imitates how the family yelled, “You led us to believe Mother would recover. Why did you let us have hope?”
I open my mouth to respond, but he continues, “Nowadays, all survivors ever talk about is hope, hope, hope. Well, in this case, I think hope made things worse.” Quietly he mumbles, “Even the word—‘hope’—now leaves a bitter taste.”
I'm used to nurses complaining about doctors who hide behind the statistics and never mention hope, or patients despairing when their doctors, assuming a posture of certainty, extinguish hope. After years of writing and talking about hope, this is the first time someone suggests a problem with too much hope.
Mentally replaying my lecture, I fast-forward to my comments about hope: “Myriad factors affect a patient's hopes, not the least of which is the prognosis.”
I remember segueing into the paradox of competing obligations: Doctors and nurses are obligated to be truthful; at the same time, they are obligated never to extinguish hope. Then I asked the audience, “If remission is unlikely or death is imminent, can you be both honest and hopeful?”
After pausing, I delivered the punch line, “Yes, by separating expectation and hope.”
Expectation is the outcome you think will happen. Hope is the outcome you want to happen and believe is possible, even if unlikely. People can expect one thing and hope for another. When my long-term prognosis was bad, I learned that I could expect to die of my lymphoma or some complication of treatment and, at the same time, hope for a durable remission, if not cure.
This insight arose after talking with survivors who felt hopeless because, as I saw it, they'd collapsed together expectation and hope. When the prognosis isn't good, patients seemed to lose hope more easily if their physicians discussed only their expectations. So I suggested to the oncologists-in-training, “Share both your expectations and your hopes with your patients.”
I offer my hand to my young colleague, “Thank you for your provocative question, Dr…?”
“Please, call me Joe,” he says as he shakes my hand and relaxes.
“Joe, I've met so many patients who, having heard nothing hopeful in their doctor's office, mistakenly think their physicians have absolutely no hope or, indeed, their situation is hopeless. This hopelessness causes great suffering.”
“I understand,” Joe responds. “But after what happened to that doctor, I'm worried that sharing my hopes will lead patients to conclude things are more hopeful than they are. I'd hate to get sued by a family if, as expected, a patient dies.”
Joe paints a picture in which the reverberations of a doctor's hope—the same hope that sustains a family through crisis after crisis—overwhelm all evidence of imminent death. He concludes, “The problem is complicated because people desperately want and need to have hope.”
I think back to some of my terminally ill patients and how I relied on reality—a patient's deteriorating condition—to help everyone keep things in perspective. The physical wasting away, the clouded consciousness, and, at the end, the death rattle helped families expect and adjust to what was happening.
But, with today's supportive therapies routinely bringing back patients from the brink, it is not farfetched for patients and their families to keep waiting for a rescue until the patient is cold.
I still believe we help patients nourish hope when we clearly separate our hopes from our expectations, and share both. But it probably requires more. I wonder aloud, “Should the message be about guiding patients to a healthy balance of expectation and hope?”
Physicians who open the door to hope help heal patients. What particular hope a patient might hold onto depends on what hope helps that patient live fully, especially at the end of life. Some patients find peace and happiness in their last days by letting go of all hopes of recovery, instead hoping for comfort and loving kindness as they slip away. Others find happiness by preparing for death and then, until their dying breath, holding tight to their comforting hopes for a cure.
The survivors' dictum “Choose hope” helps patients find hope in otherwise overwhelming circumstances. Today's culture of positive thinking haloes physicians who strive to nourish patients' hope. But, like all ideas born of passionate benevolence, a hopeful stance can lead to disaster.
Expectation is a state of mind; hope is a state of heart. Doctors and nurses help patients heal when we separate our hopes from our expectations, and then share both with our patients. By guiding patients' efforts to deal with what is happening while encouraging them to nourish hope, we help people live until they die.
Award for Dr. Harpham's OT Column!
Congratulations to Wendy S. Harpham, MD, who has won a Silver Award from the American Society of Healthcare Publication Editors (www.ashpe.org) in the category of contributed regular columns for her “View from the Other Side of the Stethoscope.”
The Society notes that the awards were established to recognize outstanding editorial excellence and achievement in health care publications.
Dr. Harpham has been writing the column since December 2005, and electronic versions of all of them are posted on the OT Web site (www.oncology-times.com).