Feb. 14 - It’s a common belief: a person’s positive attitude can help fight illness. But an Australian study, published in the Feb. 9 online issue of the journal “Cancer,” found no correlation between optimism and survival in lung cancer patients. In fact, the authors of the study pointed out that patients can feel pressured by others—and themselves—to maintain a positive attitude, and if their illness worsens, may believe their inability to be optimistic is at least partly to blame. An optimistic outlook can enhance quality of life, the study says, by prompting people to take better care of themselves. But any hope doctors give patients should be tempered in reality, and patients should be encouraged to express both positive and negative feelings.

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Hope and optimism: these words are often used interchangeably. One of the missions of Dr. Jerome Groopman, author of a new book, ‘The Anatomy of Hope: How People Prevail in the Face of Illness,” is to define what “true hope,” as he calls it, really means.  Groopman, a Harvard Medical School professor, believes that while a person’s ability to hope may not guarantee recovery when confronted with a deadly disease, its powerful influence can still be felt in myriad ways. “Hope, I have come to believe,” he says in his book, “is as vital to our lives as the very oxygen that we breathe.” NEWSWEEK’s Laura Fording asked him for his opinion of the Australian study and for his own discoveries about how hope relates to disease.

NEWSWEEK: What would you say is the difference between optimism and hope?
Jerome Groopman, M.D.: An optimist says, “Everything is going to work out for the best.” In fact, in life, that is often not the case. True hope is clear-eyed. It does not make that assumption. It sees all of the problems, all of the difficulties that lie ahead, and through those obstacles it finds a possible realistic path to a better future.

Michael Ronnen Safdie Jerome Groopman, M.D.

When that happens, several things happen. First, by having information and clear vision, you are able to make the best choices for yourself. No guarantees, but the best choices. Second, it triggers a set of chemical changes in the brain and in the body. I didn’t invent this. I found this out by interviewing some of the top neuroscientists and experimental psychologists in the country. It’s in the end of the book, in a chapter called “Deconstructing Hope.” When a patient finds true hope, it’s very different than optimism.

What do you think of the study?
The good part about the study is that [the researchers] are trying to ask important questions. They are also addressing lots of unsubstantiated issues that exist in the popular mind, including the notion that if you’re not optimistic about getting better, than it’s your fault when you don’t. The negative side of the study is that optimism is not hope. There is an important difference. It’s also not clear to me whether they studied sufficient numbers of people... They imply and they criticize themselves for raising expectations of patients at the beginning of the study to expect a more dramatic effect from the treatment… And [they studied] strictly lung cancer. Is what they found also true for breast cancer? Is it true for lymphoma? Two other very important issues, from my point of view, relate to hope. A person’s educational level, how they assimilate information and make choices, was not studied. And [it appears] people didn’t choose their therapy... One of the greatest things about hope, in terms of potentially influencing outcome, is that it allows you to make clear-eyed decisions.

So a person who has true hope will still have fears and will run through the gamut of emotions.
Absolutely. And also understands that things may not work out for the best, but has the courage and the resilience to try to move forward through all of the difficulties. That’s the way real life works. That’s what happens in the clinic and in the hospital.

But just having hope won’t necessarily beat the odds.
Without hope you are lost. Without hope you have no direction to go in. You have no courage and no resilience.  Hope gives you a chance. George Griffin [a pseudonym for a doctor described in my book] would not be alive today if he didn’t have hope. He had no illusions about the odds. At the time, he was one of the world experts in stomach cancer and I was a young oncologist on the staff. George developed what looked like incurable stomach cancer. And he insisted on being aggressively treated. I thought he was, essentially, out of his mind. Eighteen years later, when I wrote the book, I interviewed him and told him if I had been his doctor, he would have died, because I had written him off. He explained to me that he had the right to hope. That he needed to try, he needed to struggle, he knew the odds were long, but that nothing in medicine, or biology, is written in stone. If you are in that small fortunate group that makes it, and you never know, then it’s 100 percent for you. So did hope save his life? Yes. Was it a guarantee? Not at all.

But without it, he would be dead.
Correct. That is a key point. That’s what true hope is about.

Can you distinguish between what you have described as false hope and true hope?
False hope comes in two forms. One is when a doctor misleads you.  I say this in the second story I tell, the story of Frances Walker [also a pseudonym], the woman with colon cancer. Basically, a doctor misleads by suggesting to the patient that everything is going to work out okay, that there are treatments that are going to be effective. [He or she] uses euphemisms, but doesn’t give the patient all of the information, doesn’t tell the complete truth. That does a terrible disservice. It always blows up in everyone’s face.

In what way?
I believe very strongly that people have the right to choose [their treatments] based on knowledge. Some people are like George Griffin. They say the odds are long but they’re going to fight and go for it. Other people say they’d rather not. The odds are too long and they’d rather spend the next year or nine months, if that’s what it is, on the beach. Also, people need to know what all of the possible outcomes are so they are able to use the time they have left…

Wisely.
Exactly… So we had misled this woman. We basically implied that we were going to cure her of her cancer, when, in fact, we thought we would not. That’s one type of false hope.

A lesson you learned early on.
A very hard lesson. Then I swung in the opposite direction, where you can become very brutal with statistics. A doctor can sometimes sit like a presiding judge and say, “Well, the average survival is six months.” And the patient hears: “I’m dead in six months.”  Frankly, no one knows what the bell-shaped curve is. I see lots of people who are told they have three months to live, or six months to live, and they live two years. The other form of false hope is blind optimism: “Yes I have this cancer, but it’s all going to be fine. I don’t need to worry about anything, I don’t need to pay attention to the details. It’s all just going to happen.” And that is not true. This actually puts the doctor at a disadvantage, because the doctor needs to partner with the patient and get information from the patient so that the doctor can jump on complications, changes in clinical status and so on. People like that are in denial and they tend to ignore changes in their bodies that might be very important.

How does a doctor foster a sense of hope when someone’s chances of survival are poor?
It’s individual, from doctor to doctor, and it’s not a formula and it’s not perfect. But after 30 years, I say, “There’s a worst-case scenario and a best-case scenario. We know what the worst-case scenario is: the cancer will not shrink with the treatment. The disease will progress.” And deep inside, every patient knows that that’s possible. And I might say, “That, unfortunately, is true for the majority of people.” If someone asks exactly what percent, I can tell them. If they say, “That’s enough for me to know,” then they’ve been informed. But you have to explain the statistics, spend the time. Then you can say, “There’s also a best-case scenario. First, with the drugs we have, some people go into a very long remission. It may not be a complete cure, the cancer may come back, but it might give you a much longer time of life and quality of life. Second, there are people who are actually cured of this, despite the long odds. Third, and I’ve seen this many times in the course of my career, a new drug or a new treatment arrives in time to save someone.” So you’re honest with someone, they know that things may not work out in their favor, they may want to have a ball-park idea or a specific idea of what the percentages are. But there is always hope. You can’t just write someone off. And that’s how I believe that truth and hope can coexist.

So new treatments are giving reason to hope?
In the late 1970s, I remember a man, a teacher in Los Angeles, who had testicular cancer. It was almost completely filling his lungs. He had three young kids, he was a lovely guy. Everyone looked at him and thought he was dead. We had an experimental drug, it was called platinum. It completely melted the cancer away. Saved his life… Now people who wouldn’t have gone into remission with lymphoma are going into remission and it looks like some people are going to be cured. And AIDS: There used to be 10-12 people who died every year of AIDS in our clinic. I know of one person who has died in the last two years.

Do you think most doctors practice what you are trying to practice?
I got a lovely note from the professor who was my mentor and advisor all through medical school. I went to medical school 32 years ago. He said, “I read your book. You were never taught about hope and it’s something we really need to do.” Hope was seen as soft and squishy and not the real modern scientific medicine. But every patient who comes to a doctor comes looking for hope. And there is a legitimate biology of hope. We are just beginning to define its reach. We don’t know its limits. It’s not a magic wand. But it can have profound effects on a number of clinically important factors.

What can cancer patients—or other patients with grave illnesses—do to make sure they are getting the information they need from doctors?
They need to get second opinions… A patient facing any complicated issue needs an independent second opinion, needs to do his or her own homework, and the options being offered need to make sense. It is not easy to navigate the world of medicine.

How does a person’s will figure into the outcome?  I think of George Griffin, the doctor you wrote about. He clung so persistently to the thinnest strand of hope. It seemed more about will than hope.
I think the will to live is a very powerful force. It’s instinctual, it probably varies from person to person. Hope is different. It has a cognitive or informational component which involves gaining knowledge, learning, seeing what’s in front of you, and with that, making very deliberate choices. The will to live is very important, in terms of survival. Hope is a higher function. You need both, for sure. If you don’t have a will to live, it’s very hard to find hope.

When a patient feels more in control do you think it helps? Or are there instances when feeling in control can’t help?
Having control potentially can help clinically in terms of outcome, but it may not. Again, it’s not a magic wand where you switch it on like a light. Still, having a sense of control is extremely beneficial in terms of lowering fear and anxiety and being able to make choices. There is a whole other dimension to hope, though. The very last line of the book says, “For those who have hope, it may help some to live longer, and it will help all to live better.” When you have a sense of control, when you’ve made choices and you don’t feel totally at the mercy of those around you, it can give a person enormous comfort and strength and equilibrium in facing very difficult circumstances.

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