A case for compassion?
While outright lying to patients is rare, many physicians (particularly oncologists) say that at some point in their career they have failed to answer questions directly, given incomplete information about the burden or benefit of treatment, and otherwise avoided "imminent death" discussions with patients suffering from an advanced disease, says Thomas J. Smith, professor of internal medicine, hematology/oncology at Virginia Commonwealth University and cofounder of the Thomas Palliative Care Unit at VCU Massey Cancer Center in Richmond, Va. Just 37 percent of terminally ill patients, he notes, have explicit conversations with their doctor about the fact that they are going to die from their disease.
The most common argument against obligatory truth telling is the impact it may have on a patient's physical or emotional state. Healthcare providers in other parts of the world, like central Asia and the former Soviet Union, still censor information from cancer patients on the grounds that it causes depression and an earlier death. "None of that is true," says Smith, whose study earlier this year found that giving honest information to patients with terminal cancer did not rob them of hope. "Most patients, certainly in the Western world, want to know what they have, what their options are, and what's going to happen to them."
Above all else, Smith notes, patients want assurances that their doctors and nurses won't abandon them when their treatment options run dry. "When there's nothing left to be done to make the cancer go away, there are still lots of things to be done to help that person adapt to their new reality and maximize the time they have left," he says, noting the benefits of knowing the gravity of their condition far outweigh sparing patients from any anxiety. Disclosure enables patients to plan — to create a will and living will, make their wishes known to family members, pass along what they've learned to loved ones, name a durable power of medical attorney, decide where they want to spend the rest of their life, and make spiritual and family member amends. "You get the chance to do what some people call a life review," says Smith.
Indeed, most studies over the last decade found that patients who were told candidly they are going to die lived just as long, had better medical care, spent less time in the hospital, and had fewer "bad deaths" — those whose lives ended in the ICU, ER, or with CPR — than those who were not. A 2008 study of 332 terminally ill patients and their caregivers by researchers at the Dana-Farber Cancer Institute also found that patients who had end-of-life discussions were not more depressed, worried, or sad than those who did not. Instead they were far more likely to accept their illness and preferred comfort care over aggressive life-extending therapies, which often create upsetting side effects and hamper communication with loved ones. Interestingly, these results of full disclosure also had a "cascading effect" on the patients' loved one's ability to cope with their loss. Individuals whose loved ones died in an ICU were more likely to develop a major depressive disorder than those whose loved ones did not receive such intensive care.
What's your motive?
Another reason doctors give for creating a less painful truth is that a full discussion takes too much time, the same reason doctors cite for their reluctance to initiate DNR discussions, says Smith. "It does take more time to say, 'Let's talk about your illness and how you're coping with it,' than it does to say, 'Well, the next chemo we're going to try is XYZ,' because if you start talking about the fact that that treatment has a marginal if any benefit and that person is going to die sooner rather than later it takes a lot longer," he says. "A good doctor will sit and listen to the answers and that takes time."
And then, of course, there's the simple fact that it's tough. "The real reason doctors avoid having these discussions is that it's just really hard to look another person in the eye and tell them that there's nothing more that can be done to make them live longer or give them a miraculous chance of a cure," says Smith. "Anyone who says, 'Oh, that's just part of your job,' probably hasn't done it very much."
It's all in the delivery
Dixon says an important part of delivering difficult truths to your patients is learning how to read your patients' personalities. While all are entitled to the truth about their condition, some are satisfied with a broad picture of their illness and the options available. Some need a greater degree of detail and others need it all in small doses. Patients facing death also differ significantly in the type of medical care they wish to pursue. Some, particularly younger patients, will seek more aggressive treatment options, while others (primarily the elderly) just want your support with as little medical intervention as possible. "If you sense that you're going too fast, or that it seems too scary, you can say, 'Look, sometimes we talk awfully fast. Do you want to stop here and come back next week and talk more about this? We don't need to do it all right away.'"