Truth-telling and hope not mutually exclusive
"At what price is cure a goal? And what price does hope carry?" Lindsay E. Rockwell, MD, a Northampton, MA, oncologist, wrote in a Journal of the American Medical Association article.1
Truth-telling and the encouragement of hope in cancer patients is a subject that requires careful analysis to determine exactly what the hope and truth are aimed to accomplish, says Larry Cripe, MD, an oncologist who teaches hematology/oncology at Indiana University School of Medicine in Indianapolis. If by "hope" the only meaning is "cure," then anything short of aggressive chemo-therapy right up to the point of death can be seen as surrender.
In an Institute of Medicine report on the care of dying,2 the authors concluded that a lot of suffering at the end of life is due to the failure of the physician to disclose hospice and to the unrealistic expectations of the patient or family, says Cripe.
The failure of care providers to push for dialogue about hospice and care for patients as they die often lies in the conflict between what is viewed as compassionate and what is viewed as the truth. Often, clinicians, family, and patients fear frank discussion of hospice and death aggressive therapy in favor of comfort care will destroy hope. But hope can have many guises; just as healing does not always mean curing, points out J. Vincent Guss Jr., MDiv, chaplain at Falcons Landing Air Force Retired Officers Community in Potomac Falls, VA. "It's a matter of refraining what to hope for," he suggests. "There should always be hope, always, even for a dying patient."
There's hope in end-of-life care
Medicine is, in some ways, experiencing a repeat of what it went through a few decades ago in changing how it handled negative diagnoses. The once paternalistic tendency to shield patients from the full brunt of serious or terminal diagnoses gave way to the patient autonomy-driven belief that more than anyone else, patients deserve to know what their health is.
The same process now is happening with the handling of prognoses, particularly when the clinician or the patient believes the time has come to go from aggressive treatment to caring through the end of life. "When you disclose a [negative] diagnosis, it's distressing, but you feel you can do something about it," Cripe says. "But a [negative] prognosis strikes at medicine's fear of not being able to do something."
Cripe wrote about a situation he experienced with a patient dying of leukemia. The patient, hospitalized and weak, was undergoing daily transfusions with no apparent benefit. When Cripe brought up the suggestion they talk about caring for him through the end of his life, the patient asked, "So you believe ... that it's hopeless then?"3
Rather than pursue the subject, Cripe writes that he dropped it and never resumed the conversation about hospice, advance directives, or end-of-life care. The patient died about a week later during an outpatient transfusion. Reflecting on that patient, Cripe delves into the different meanings of "hope." For that patient, hope meant pursuing treatment until the very end. Cripe writes that today, he would try to convey to that patient that there is hope in end-of-life care.
Fundamental to a patient such as the one Cripe describes, believing in hope at the end of life might lie in how the doctor-patient relationship has been framed up to that point. "If a reasonable person were sitting with someone who has a 75% chance or greater of dying in the next 18 months, you would want to address that," Cripe explains. "So how do you model your relationship with someone in that situation so that at the end of their life, there's sufficient trust for you to say, 'I think it would be better to care for you as you die than to pursue chemotherapy'?"
If the relationship has not been modeled on more than the doctor's skill at writing prescriptions for chemotherapy, once chemo is no longer effective and is out of the picture, what is left holding the doctor-patient relationship together? Cripe asks. "But if someone comes in with metastatic lung cancer, and you know there's a 75% to 80% chance they will be dead within a year, you don't want to tell them that, because that would only discourage them," he continues.
Instead, he suggests, say "tell me what your goals in life are, what you're hopeful for," and then engage in dialogue about that. If a patient's goal is to see a young child graduate from college, Cripe says a natural step might be to ask that if he couldn't see his son graduate from college, what's another goal? "How can we reframe that goal to preserve hope?" he says.
References
1. Rockwell LE. Truthtelling. J Clin Oncol 2007; 25:454-455.
2. Institute of Medicine of the National Academies. Approaching Death: Improving Care at the End of Life. Washington, DC: Institute of Medicine; 1997.
3. Cripe LD. A piece of my mind: Hope is the thing with feathers. JAMA 2006; 296:1,815-1,816.
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