CANCER And Heath Care Reform-- The Real Kind

Earlier this summer someone I was very close with died of cancer. Although I tried several times, I was in such shock and so grief-stricken that I found it impossible to write about my feelings. My old friend Dan Levitan's review yesterday in the NY Times of Your Medical Mind served as a reminder that it's something I still need to do.

Until I retired from the music business, Richie and I ran Reprise Records, a part of Warner Bros., together. We were partners with adjoining offices and conferred on every single decision for many years. Richie had seemed withdrawn for all of 2011. I knew he was thinking about moving to Nevada and figured that's why I wasn't hearing much from him. Then his wife let me know that he had pancreatic cancer and probably didn't have much time to live. I asked if it would be better for me to come over to the hospital that day or would it be more convenient if I came another day. She let me know if I wanted to be sure to see him I should come immediately. I cried the whole way there and prayed I had cried out all the tears I had in me so I could be cheery in the hospital room.

I sat alone with Richie for a time. Once I got past how ravaged his body was by the... the... the... well, the cancer, the chemo-therapy, the ordeal, I realized how this was exactly 100% the exact same person I knew and loved. His eyes were the same; his mind and his voice and his positive, optimistic spirit... they were all the same.

Richie had pulled his plug; he had told the doctor to stop the extraordinary efforts to keep him alive. It was too painful. I guess he found it had-- after nine months-- crossed the border into pointlessness. As long as I'd know Richie, his wife was half of him. His two children-- now teenagers-- were his life. The 9 months, the last few of them spent in physical agony, was what he needed to say "goodbye, I will always love you." I asked and he told me it was worth what he went through for that. He died, in his home, surrounded by his family, three days later.

Nine or ten years ago I was diagnosed with prostate cancer after a routine PSA test-- the test that many in the medical profession are now warning against. We'll get to Dan's review in a moment but let me say that the friend he refers to in the last paragraph is me. Once my doctor told me to read up on prostate cancer-- which had killed, or at least the treatment of which had killed, my father-- so I could pick between surgery, chemo and the nuclear option (radiology), I started with a book he gave me, a book he had never finished reading. How do I know he never finished reading it? After meeting with a "the biggest" surgeon in L.A. and the head of radiology at Cedar Sinai, I made my decision. When I told my doctor I was going for the 4th option in the book he gave me he was confused, then pissed off. There's a holistic, natural way of treating this slow-moving cancer. I found another doctor to guide me through it, Timothy Brantley-- who later included my story in his book, The Cure.

Dan Levitin is an old friend from San Francisco punk rock days. Now he's a professor of psychology at McGill University in Montreal, specializing in neuroscience. He's also a best-selling author (This is Your Brain On Music). He's been spending a great deal of time recently thinking about prostate cancer and how the disease is treated. His phenomenal review for the Times reflects that and there's probably no way they could have ever imagined they would be getting such an intense piece of writing for what have been assigned by someone looking for something more routine. "Most of us believe we are rational decision makers," he begins. "But medical decisions are especially complex, thanks to the numerous unknowns and the uniqueness of each person’s body. Suppose you’ve just found out that you or a loved one has prostate cancer, one of the many examples in Jerome Groopman and Pamela Hartzband’s illuminating new book, Your Medical Mind. Nearly every urologist would recommend radical surgery to remove the organ. Sounds reasonable, doesn’t it?" That of course is what urologists do for a living-- they remove prostates. Did you know that? I didn't when the "biggest" one in L.A. was practically fondling his tools as he told me I had to have mine cut out. Dan has a better idea.

But let’s look at the numbers more closely. Prostate cancer is slow-moving; more people die with it than from it. According to one 2004 study, for every 48 prostate surgeries performed, only one patient benefits-- the other 47 patients would have lived just as long without surgery. (Groopman and Hartzband discuss the important epidemiological concept “number needed to treat,” which applies to surgeries, prescriptions, therapies, you name it.) Moreover, the 47 who didn’t need the surgery are often left with an array of unpleasant and irreversible side effects, including incontinence, impotence and loss of sexual desire. The likelihood of one of these side effects is over 50 percent-- 24 of our 47 will have at least one. This means a patient is 24 times more likely to experience the side effect than the cure.

Your Medical Mind, a kind of sequel to Groopman’s 2007 best seller, How Doctors Think, aims to empower patients to become active participants, indeed negotiators, in decisions about their health care. “The path to maintaining or regaining health is not the same for everyone,” Groopman and Hartzband write. “Medicine involves nuanced and personalized decision making by both the patient and the doctor.” I suspect insurance companies, H.M.O.’s and more than a few doctors are going to hate this book.

Groopman and Hartzband explore two sets of biases that affect patient decisions. We can be minimalists, preferring to do as little as possible, or maximalists who aggressively pursue treatment. We can be technology enthusiasts, seeking the newest drugs or procedures, or naturalists who believe the body can cure itself, perhaps with the aid of spiritual and plant-based remedies. Of course, these orientations interact: anyone who lives in Northern California knows someone who eagerly takes armloads of herbal supplements while having their chi realigned in between weekly acupuncture sessions (maximalist-naturalist). And there are minimalist-technologists, who avoid medical treatment when possible but if surgery is required will ask for the latest high-tech robotic laser surgery. Understanding these biases, the authors argue, can lead to more effective doctor-patient dialogue.

Groopman, an oncologist at Harvard Medical School and a staff writer at the New Yorker, and Hartzband, an endocrinologist at Harvard, introduce a number of other helpful concepts readers may not be familiar with, like the “risk for disease,” which is important to untangling disease statistics. Say a drug promises to reduce your risk of fatal illness X by 50 percent. Sounds great, doesn’t it? But suppose there was only a one-in-1,000 chance that you’d get the disease to begin with: reducing your risk by 50 percent means that you’ll now have a one-in-2,000 chance of getting it. Most medications have side effects, and the likelihood of these may far exceed that of being helped by the medication. For example, the “number needed to treat” for a particular cholesterol-lowering drug is 300. (For every 300 people taking it, only one heart attack is prevented.) The drug has a 5 percent probability of side effects, including severe muscle and joint pain and gastrointestinal distress. Thus, for every person helped, 15 people (5 percent of 300) will experience side effects and not be cured. In other words, anyone taking the drug is 15 times more likely to experience the unwanted effects of the medication than the beneficial ones.

...Much of this decision making revolves around your own willingness to take risks and your threshold for putting up with inconvenience, side effects or pain. Returning to prostate surgery, consider that six weeks is the advised recovery period. Coincidentally, the operation will, on average, add six weeks to your life. (This averages across the 47 people who had no benefit from the operation and the one person who did.) To my way of thinking, the decision then becomes this: When do you want to “spend” those six weeks? When you’re relatively young and feeling well, or at the end of your life, when you’re old and only dimly aware of your surroundings?

But as Groopman and Hartzband argue, we can put up with things we could not have imagined. Extensively incapacitated patients tend to report life satisfaction equal to what they reported previously. Facing death, we often completely reassess what we thought we could tolerate, just to add a few more weeks to life.

“If medicine were an exact science, like mathematics, there would be one correct answer for each problem,” Groopman and Hartzband write. There isn’t. One close friend of mine with prostate cancer opted for immediate surgery, fully aware of the risks and side effects, just to “get the cancer out-- now!” Another said he would rather risk dying sooner than lose sexual function, and so he rejected surgery in favor of a vegan diet and yoga, and has no regrets 10 years later, remaining happily symptom-free. Groopman and Hartzband’s important book will help doctor and patient learn how each of us navigates our own tolerance for risk, thus improving outcomes on both sides of the examination table.

NPR was going very much in the same direction-- specifically about prostate cancer-- this week. I just happened to hear an interesting interview by Patt Morrison a couple days ago which you can listen to here about how the harms that flow from PSA tests outweigh the benefits. I wish I could find a transcript. It's well worth listening to what Doctor Michael LeFevre has to say.