HOPE OF CURE 

A recent topic in Medscape Connect, an all-physician discussion group, engaged doctors in talking about the often unrealistic expectations of terminal patients and their families. The conversation began with a query from an oncologist who cited an article from a recent issue of New England Journal of Medicine indicating that most "patients with stage IV lung and colorectal cancer undergoing palliative chemotherapy still believe that treatment might cure their disease."^[1]

"How do you combat the fantasy of cure?" the oncologist asked.

"We are a worldwide society addicted to hope and miracles," replied an internist. "We physicians, on the other hand, have a role in providing not only relief of suffering but also hope, lest one take a daily dose of being labeled uncaring or [even worse] part of the death panel."

"I don't believe in treating my patients like mushrooms. You know how they raise mushrooms? Keep them in the dark and feed them on equine manure," wrote one oncologist, who then continued with a warning: "I would also note that in [some states] it is against the law to deliberately mislead a competent patient about their diagnosis...In other jurisdictions, there have been malpractice cases regarding this issue."

Another oncologist spells it out with mathematical rigor: "One can keep hope in these conversations by [using] terms that patients and their family members can understand, by advising them of the 10th percentile, 50th percentile, 90th percentile, and 99th percentile of your best estimate of their prognosis. Then tell them that you hope they do better than any patient you have ever cared for but want them to be prepared in the case that that doesn't happen."

But a gastroenterologist countered that even this kind of precision can fail: "If you explain all that to patients in a visit, the next day most patients will remember only the last line. Many patients in that study [from the New England Journal of Medicine] who reported lack of understanding of their prognosis may have been told about these [data] too but have since forgotten."

An oncologist agreed that many people latch on to the most optimistic news: "When I tell a patient that a treatment has a less than 5% chance of keeping them alive a year later, they usually respond with, 'So I have a chance?' Anyone who has ever treated cancer patients knows that there is never zero chance."

Another oncologist, while advocating honesty, warned that it must be wielded with subtlety: "Patients often hear what they want to hear and are emotionally prepared for and capable of hearing. The same goes for patients' family members who may also be in attendance. That is human nature. When presenting bad news to patients or their families, one often has to walk a fine line between clearly presenting the situation in no uncertain terms and bludgeoning them with bad news."

But an intensive care physician lashed out against this attitude: "Patients only believe medical myths because their doctors, either implicitly or explicitly, make them believe. And those same doctors make no effort to set those patients straight. Maybe if some of those same oncologists were more honest with both patients and themselves, this problem wouldn't be so prevalent."

An oncologist countered that outside misinformation frequently subverts the very clear message of a physician: "They do not always get that false information from doctors. It has been my experience that they often get it from lay sources. Just last week I saw a patient who had a recurrent cancer that was so extensive, it was literally growing through her skin...The next day I saw her in the ER after she was intubated despite our family discussion about a DNR the day before. It did not matter that the intensivist, her PCP, and I told the family that there was no hope. The family insisted that everything be done."

A gastroenterologist recalled a colleague's outrage toward an attempt at straightforward honesty: "I got a call from a very angry oncologist last year. She yelled at me because she has to reverse the facts from the article I gave to the patient and give the hope back to the patient."

A surgeon suggested an economic reason for providing unreasonable hope: "Misunderstandings about futile prognoses are often overpowered by the entitlement mentality, in particular the need to keep Social Security benefits flowing. The final Medicare benefit, hospice care, tends to be underemphasized by private-practice oncologists unless they play a role in directing this care. Doctors and patients frequently have opposing financial agendas nowadays, especially if it involves death."

Finally, an oncologist mentioned the complicating factor of patients whose survival borders on the miraculous: "I agree that patient misconceptions about their disease and long-term prognosis is difficult. Making it worse, of course, are patients with tremendous survival, such as an employee's father with metastatic adenocarcinoma of the lung who has been on therapy since presenting 4 years ago."

For many patients, one anecdote bearing hope outweighs any number of counterexamples.

The full discussion of this topic is available at http://boards.medscape.com/forums/.2a36ecf7/0. View this and other discussions in Medscape Connect. Please note that this is open to physicians only.