In his beautifully written, recently published novel “And the Mountains Echoed,” Khaled Hosseini presents a series of stories in which individuals are faced with near-impossible choices.
Impossible choices permeate Khaled Hosseni’s latest novel. Studies show many doctors struggle to help their patients through their most difficult choices.
As difficult as the decisions in the book seem, it turns out the worst possible choice is hiding from them.
Reading these powerful narratives, I wonder how many scenarios were inspired by Dr. Hosseini’s personal experiences as a practicing internist.
Every day throughout the U.S., patients and their families must make excruciating medical decisions. A fundamental role of the physician is helping them through this difficult process.
Some choices are painful but easy to make, such as deciding to amputate a gangrenous limb to save a child’s life. Often, however, doctors must present options and make recommendations when there is no “right” answer.
Doctors worry patients can’t face the truth. All too often, however, it’s the physician who struggles to admit there’s little more he or she can accomplish.
Telling patients with incurable cancer that they will die soon is painful. Most doctors don’t do it well. Some hide from it.
According to a recent New England Journal of Medicine study, at least two thirds of patients with advanced cancer think chemotherapy will cure them. Except for rare tumor types, chemotherapy is administered to minimize the effects of metastatic disease on the body. In other words, it can’t cure them.
In some situations, a doctor’s honesty may dissatisfy a patient. But the best medicine for all patients is the truth. As physicians, we must do a better job of explaining what is happening, even when the news is difficult to hear.
For most of their lives, people are not likely to die. But at some point, most of us will develop a serious medical condition. When the time comes, we want the clinicians caring for us to speak the truth in a way we can hear — with compassion and respect for our end-of-life decisions.
The truth is what enables a patient to understand the reality of the situation. It’s what helps a patient do what is necessary and important while there’s still time.
But telling patients the truth about the risks and benefits of aggressive therapy has gone off the rails. In fact, informing patients with advanced disease that they are likely to die has even become embroiled in political debate. Some have confused it with rationing or withholding medical care. It is neither of these things. Telling patients the truth about their medical problems is what most want to hear and what all patients are entitled to know.
Eight in 10 people in the U.S. say they would want to speak with their doctor about end-of-life care if they were seriously ill. Yet less than 1 in 10 people report doing so.
The exception is in La Crosse County, Wis., which has been referred to as “the best place to die.” More than two decades ago, Gundersen Lutheran Medical Center (today Gundersen Health System) created a systematic approach to care planning.
If you are dying in La Crosse County today, you have a 90 percent chance of having your wishes known. You also have a 99 percent chance of having those wishes honored. The term they use for this in La Crosse is “Respecting Choices.”
Make no mistake about it. End-of-life conversations are very difficult. They take time. A lot more time than the 5.6 minutes doctors spend on average discussing advanced directives, according to one study.
Some physicians choose the convenience of not telling the truth to avoid disappointing their patients. Some do it to protect their own time. Others struggle to confront their own limits as doctors. Many justify promising the impossible (or at least the improbable) as wanting to “preserve hope.”
It would be one thing if promising more would increase a patient’s joy. Research has shown the opposite.
When patients hear the truth about their illness — and when they have the opportunity to have a facilitated conversation about their goals of care — they are happier and live longer. That remains true even when patients choose less-aggressive interventions.
Seventy percent of patients want to spend their last days with their families at home. The majority spend their last days in a hospital away from those they love the most.
Some patients with terminal illnesses choose radical treatments, hoping for a few extra days or a 1 in 100 chance of being cured. Doctors need to honor those choices. But this is not the case for most patients. And when physicians refuse to be honest, they fail to respect their patients and undermine their dignity.
The majority of patients are stronger than many doctors realize. Physicians owe their patients the truth, even more toward the end of their lives than at any other point.
In spite of all the clinical advances in the science of medical practice, we as doctors have much to learn about admitting our limitations. Even when there is little we can provide to our patients by way of medical treatment, the two most powerful therapeutic tools we possess are truth and compassion.
Robert Pearl is a physician and CEO, The Permanente Medical Group. This article originally appeared on Forbes.com.
