Doctors can deliver hope as well as facts of prognosis

Commentary. By Julia Schopick, amednews contributor. March 12, 2001.

COMMENTARY

Observations on the state of medical practice and medical life

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Your patient is a 45-year-old professional man with no previous medical history. A lump in his neck caused his internist to refer him to you, an oncologist. The pathology report states that he has anaplastic thyroid cancer.

It is one of the rarest, deadliest forms of an extremely uncommon cancer. Much of the literature points to a grim prognosis, with a median survival of two years. Most doctors recommend chemotherapy and radiation, but the cancer usually returns. Still, except for the lump in his neck, he appears healthy -- and hopeful.

What do you tell him?

If you're like many physicians, you repeat the above prognosis almost verbatim. Many doctors, not wanting to give false hope, offer a basic bottom line of months or years. But this approach often doesn't take into account other variables.

For instance, many might not tell the patient that the fact that he is 20 years younger than the average ATC patient, and that he is in otherwise good health, bodes well for him. Many also might omit the fact that a median survival of two years means only that the middle person in a particular trial -- say, the 11th person in a 21-person study -- lived two years, but others lived longer, possibly much longer. They would simply say: "Mr. Patient, your prognosis is grim. According to the studies, the median survival is two years. I recommend radiation and chemotherapy, but the cancer will probably return." Still others would advise the patient to get his affairs in order and enjoy what time remains.

Do these doctors help their patients by telling this truth? Not necessarily. Although this part of the message is important, there is another element that should not be overlooked.

Because, according to Bernie Siegel, MD, who wrote Love, Medicine and Miracles and other books on this subject, individuals are not statistics, and there are many people walking around today who, according to medical data, should be dead. And, as many others point out, a patient's mental state dictates, in large part, the progress of his disease. If your patient is frightened or defeated by the truth he or she hears, chances for survival may take a nosedive.

The patient described above is my friend. His doctors recited, almost verbatim, the prognosis in the first paragraph. When he called me, he was considering suicide, rather than face such a painful, ugly death.

I went online. There, I found the doctor's version of the truth. The words "grim prognosis" cropped up liberally in the medical literature. But I also found more. A few patients have lived over five years with no recurrence. One 1995 study said two ATC patients survived over 10 years. This patient's fiancée, who happens to be my sister, found that a doctor she knows had a patient who is a 25-year survivor of ATC. Then I discovered that a recent phase I clinical trial using a new anti-angiogenesis drug led to a (so far) complete three-year remission in one ATC patient. I tracked down this survivor, who led me to his doctor. Although my friend didn't qualify for this particular clinical trial, further research led to an oncologist with a special interest in anti-angiogenesis, who agreed to treat him.

What is the truth of his situation now? Most important, it has changed drastically from one of wait-and-die to proactivity -- with hope, and the possibility of a positive outcome.

In my years as a patient mentor, I have been puzzled by doctors who feel that giving patients false hope is wrong. Hope alone has kept many patients alive for years beyond their expected survival time.

So how can you tell the truth in a way that will help your patients?

Never speak in totally negative terms. Remember, no truth is ever simple. There are always people who survive even the deadliest forms of every disease. It also can be helpful to double-check the latest research before talking with a patient with a troubling diagnosis. In this scientific age, new treatments are discovered daily.
Encourage patients to research their conditions. Although this may be more time-consuming for you, your patients will enjoy working with you and may have better outcomes.
Don't discourage your patients from trying so-called unproven remedies. Instead, help them choose those with the most promise -- in addition to the traditional treatments you recommend. Many mainstream medical establishments, including academic and research institutions, already have begun to move in this direction.
Encourage your patients to research nutritional solutions. More and more, the role of nutrition is being viewed as integral both to the prevention and treatment of even the most life-threatening diseases.
Don't forget how important your attitude is to your patients' survival. Most patients regard their doctors as authorities -- "If my doctor said it, it must be true." So be careful what you say. A tone of pessimism can negatively influence your patients' outcomes. Similarly, your positive attitude can lead to better outcomes.

Here are two stories, both about neurosurgeons at a Midwestern medical center. Both patients had cancerous brain tumors.

The first neurosurgeon told his patient about the severity of his condition, adding that the median survival is one year. When the patient asked if he had a chance, the doctor raised his eyes, looked heavenward and said sadly, "I could win the lottery, too." This patient died within months.

The second neurosurgeon gave his patient the same information, but omitted the median survival time. He ended by cheerfully putting his arm around his patient and saying: "But I think we're going to do just fine!"

These words, spoken 10 years ago, echo in my mind today. This doctor was my husband's neurosurgeon and my husband is still alive -- eight years after the literature would have predicted his death.

I am not discounting my husband's determination and grit; nor am I discounting the wonders of modern surgery and pharmacology; or my own devotion and nutritional, home-cooked meals. But I am thankful that our neurosurgeon believed that there is no such thing as false hope. This approach can serve as a reminder for others of the healing power and potential of the physician's own words.

Note: This column originally appeared in print as "Expert's Focus."

Schopick, of Oak Park, Ill., is both a public relations consultant for professionals and a patient advocate. For the past 15 years, she has represented numerous clients in the health care field.