More treatment isn’t always the best option

Our health care system sometimes seems like a runaway train. We all know it’s out of control, but no one can figure out how to stop it.  Here’s one example:

A man in his mid-80s, quite frail, had managed to survive two surgeries for lung cancer but the disease had now spread elsewhere in his body. His oncologist was pressing him to start chemotherapy, and he was seeking a second opinion from me. Now, understand that there was zero chance the chemo would cure him. At best, it had about a 10 percent chance of extending his life for six months beyond what would be expected without it – but he would be sick most of that time with nausea, vomiting, and weakness, and would be unable to travel away from home. After weighing the tradeoffs, he decided to skip the chemo. I have since left my position at the hospital where this conversation took place, but the last time I saw him, about six months later, he was still alive and feeling reasonably well. He had spent quality time with his family and even traveled over the holidays.

Conversations like this don’t take place often enough.  Too few consumers and doctors challenge the belief that “more treatment is always better.”  There are many reasons that we have come to believe this. Medical breakthroughs and heroic treatments are always news, whereas failures and horrible side effects are often not. Drug and device manufacturers spend billions to promote the idea that the shiniest, costliest new treatments are better than the old ones, even when there’s no solid evidence for this. High-tech treatments are moneymakers for doctors and hospitals.

I don’t see the situation getting better without some significant changes in the way we deliver and pay for health care. We need more doctors to do what I did with that man—talk through the risks and benefits of treatments, especially expensive, invasive ones. We need better research comparing old and new treatments. Right now, the incentives are in the wrong direction. Doctors earn very little for sitting down and talking to patients, but a lot for delivering costly interventions, whether they’re needed or not.

If you or someone you care about is facing decisions about treatment for a serious illness, keep the following in mind:

• You don’t have to accept the first recommendations you receive
• Insist on a meaningful conversation with your doctor, spelling out the risks and benefits of tretament
• Make sure you understand the side effects and success rates of the treatments you’re offered
• Balance those side effects and success rates against your own quality of life preferences
• Seek a second or even third opinion if necessary

—John Santa, MD, MPH

We are interested in hearing from you about your experiences. Have you ever received high-tech treatment that you later regretted because of side effects or lack of effectiveness? Have you ever turned down treatments that your doctor recommended? Did you have a tough time navigating the complexities of our system when deciding on treatment options? What and who helped you the most? What information was most useful to you? 

Share your story with us.

Comments

[rob]

My mother was diagnosed with pancreatic cancer at age 81. The doctor told her about a study for a new med for her type of cancer and got her into the study. This was a blind study and we were told by the doctor that neither he nor his staff knew what patients received the “real” med. After three months she was removed from the study. We were told it was because she didn’t show the progress they were looking for. What does that mean? Was she receiving the study med and didn’t improve or was she not receiving it and improved anyway? If anyone had had one whit of concern for her, she wouldn’t have been told that. How can any study be considered valid with data and patients manipulated in this way?
Five months after her initial diagnosis, she was hospitalized. An incident there added to the insult. I'd been staying the night in a chair in her room. In the morning, I’d go home, shower and return to the hospital. My son-in-law would stop by on his way to work so she wouldn’t be alone too long until I returned. One morning when I got back she wasn’t in her room and I learned she was having some tests. This was not expected so I called her doctor. He said he hadn’t ordered any tests and a doctor in the hospital must have ordered them but he would find out and call me back. My son-in-law called before the doctor. He had gotten there in time to accompany her to the test and was calling because he too was questioning the need for tests. To make a long story short, there was no need for any tests - mom was helpless to prevent this assault but her insurance made her a money maker. The tests were stopped. How many people undergo unnecessary tests because it’s profitable?
I have insurance. I last saw a doctor about 6 years ago for knee pain. After several visits I realized it wasn't profitable for me to get well so I gave up - still have knee pain. Other than that I haven’t seen a doctor in about 20 years. I’ve never had a mammogram. Maybe I’ll die of cancer, or heart disease or a stroke and although death is a certainty – I won’t become a cash cow in the process.

[mike]

I think this can be situational. A friend of mine was diagnosed with a type carcinoma that was projected to be fatal within five years at the outside. He underwent extensive (and expensive)experimental treatments at a famous cancer hospital in Houston. He has now lived a few years beyond the five year period and is doing quite well,occasionally returning for treatments. The reputation, standing and expertise of the hospital in question are probably key factors to consider in these situations.

[Tara]

I was diagnosed with non-small cell lung cancer in '03 at the age of 38, very young for this type of cancer. My tumor was small and had not spread beyond the lung. My treatment was thoracotomy, chemo and sternum radiation - these decisions were no brainers. However, I was offered the option of propholactic (sp) whole brain radiation (after the above treatments) as there was no definitive test to determine if one tiny cancer cell had spread to my brain. Insofar as this decision, no doctor would commit and say yes or no, the decision was purely mine. What my local Connecticut doctors were clear on was the side effects, specifically permanent and significant short-term memory loss. I sought a second opinion at NYC's premier cancer center, whose prognosis, post brain radiation, was absolutely devastating. They said the effects would probably leave me unable to hold a job or drive a car.

While undergoing my chemo and radiation I had four months to decide on the brain radiation. In the end I decided to "go for it". I advised my doctors who completely supported and agreed with my decision. Here I am 4.5 years later with short-term memory loss, no question about it, but certainly not as detrimental as the picutre painted by the radiation oncologists.

As I write this I am on short-term disability, recovering from a second thoracotomy of January 14th. As a cancer survivor I have been diligent in my follow-up scans. Unfortunaely a small growth in my lung had showed slow but steady growth since '05 and it was decision time. However, this time my surgeon left the decision of surgery completely up to me. We could do the surgery now or take the wait and watch approach. I was told I did not have to be happy with my decision but I would have to accept it.....meaning if this tumor was benign I had gone through a major and very painful surgical procedure. I polled my primary care doctor, my pulmonology doctor and oncologist ...... they advised if it were them or a member of their family, they would go forward with the surgery. In the end my decision was fairly easy. I knew I would never forgive myself if I didn't have the surgery and this proved malignant down the road.

Great news - it was benign !!!

[taylor trentwood]

I saw an ortho for severe hip pain which my PC said was arthritis. Turns out the ortho said bursitis and wanted to give me several cortizone injections into the bursa. Since my pain was better than when I asked for the appt. (three weeks ago) , I told him I wanted to just have a short burst of oral cortisone. He was very angry, basically just got up and walked out of the room by saying- imagine this- No, I dont give oral doses as THAT IS VERY DANGEROUS AND HAS SIDE EFFECTS. He did not give me pain meds, advice on what to do etc. Just stormed out of the room when I declined the "series of shots" and "surgery" if they dont work. Scary business to my thinking.

[Cara]

My gastroenterologist of many years recently retired, and my PC doc recommended one in the adjoining office. I went to her, complaining of months of a large amount of sudden unexplained weight loss, which had never happened before and I cant afford to lose. After seeing my previous reports (for diverticulosis) and finding that all lab work was negative; she advised me to take nutritional drinks and try probiotics. I asked why this weight loss should have happened, since I eat well, and she said, "the scale in her examining room isn't always right!" No digital exam, never laid a hand on me, and seemed to me and my husband who was in the room with me...that it was of no consequence. I then asked if an endoscopy would show anything, and she shrugged and said, "we could do that, but if my weight stabilizes or I gain, I should cancel." My husband thinks I should go ahead with the endoscopy, but understands that I have no confidence in her, and that is important. I will probably go to another GI doc.