Are You Getting Too Much Medical Care?

Danielle is a 21-year-old woman with a headache. Her doctor tells her that she needs a CT scan and a spinal tap. Danielle doesn’t want these tests; she knows that she drank too much last night and feels like she has a bad hangover, but should she really say no to her doctor?

Nancy is a 38-year-old woman with vomiting and diarrhea. Her toddlers have the same symptoms. The doctor says she needs to get a CT scan of her belly. He says her blood pressure is “borderline high” and that she should also start taking medication. She’d prefer to avoid drugs if possible—what should she do?

As an emergency physician, I see dilemmas like these every day, yet they get very little attention. For so long, the rhetoric has been about the danger of too little medical care. Newspapers are full of stories about deaths that have resulted from missed diagnoses and lack of access to care. TV shows glorify the detective-doctor who doesn’t give up and persists on ordering test after test in order to solve an esoteric case.

While many people still lack access to care, there’s mounting evidence that many people also receive too much care. The prestigious Institute of Medicine estimates that 30 percent of all medical tests and treatments are unnecessary. This is not only wasted money—an estimated $700 billion of unnecessary spending per year—but also potentially harmful. Every test has risks and possible side effects. A CT scan has a risk of radiation, for example, that may lead to cancer later in life. And one test often leads to another, even riskier, test.

There are many causes of overtreatment. Drug companies and technology manufacturers have their own incentives for wanting people to receive more, rather than less, care. While doctors generally mean well, they also have financial incentives for over-testing. A study in the New England Journal of Medicine found that 94 percent of doctors have some relationship with a drug company or medical device company, and many are paid more for conducting more tests. On top of that, fear of malpractice can also drive doctors to do more, just to be sure.

The problem isn’t just doctors, though. Patients also believe that more is better. New tests and treatments succeed in part because the general public tends to idolize technology. 

Unfortunately, this issue is complicated because medical advances can be helpful and save lives in certain circumstances. So how do you know when testing is appropriate—and when it’s simply too much?

There isn’t an easy answer to this question, but I recommend that you ask your doctor five key questions every time he or she recommends you undergo a test:

What Do You Think My Diagnosis Might Be?
Your doctor always has some sense of possible diagnoses before you get any tests done. You should find out what he or she is thinking; that way, you know why the tests are being done and how likely the various possibilities are. If Danielle had asked her doctor this, for example, he likely would have told her that odds are she just has a hangover and that it’s far less than a 1 percent chance that she has brain bleeding.

What Evidence Exists Suggesting this Test or Treatment is Beneficial?
This is particularly important for screening tests like checking for high blood pressure, cholesterol, and cancer. Ask your doctor what studies there are to show that a test improves quality of life. If there is no evidence for the test or if the jury is still out, you should ask why your doctor thinks you need the test and keep in mind your doctor’s possible incentives for testing and treatment.

What are the Potential Side Effects?
Every single test, even just getting your blood drawn, has side effects—and you should know what they are before you consent to any tests. Without knowing the side effects, you can’t weigh the risks against the benefits.

Is Watching and Waiting an Option?
Very few situations are so urgent that a test has to be done ASAP; most of the time, it’s perfectly fine to wait and see if other symptoms emerge or if you get better. With Nancy, for example, it would have been appropriate for her to go home and see if she gets better; she didn’t need to get a CT scan right away.
 
What Other Treatment Options Do I Have?
Doctors are trained to “fix” problems with treatments. Many of us don’t have the knowledge or time to counsel patients on other options, like diet and exercise changes and/or alternative treatments. But these other treatments may be just as effective and may help you avoid potentially harmful side effects. Perhaps Nancy’s blood pressure could be controlled with diet alone, for example. There are always alternatives; ask about them.

Ultimately, you should have a trusting partnership with your doctor and feel comfortable asking hard questions. You are your own best advocate, and you have to speak up to make sure you get the right medical care—and avoid unnecessary tests and treatments.

This article was previously published in Women's Health Magazine (posted here with their permission).

Guest Post: Let's Protect Ourselves From The Harms of Overdiagnosis

by Sonia Gow

About 20 years ago I was ill with a mystery ailment. The symptoms were flu-like and I felt totally drained of energy. My doctor said he couldn't help me because he didn't know what I had, how I got it, how long I would have it, or how I could feel better. Basically, I was on my own.

This was the beginning of my journey to figure out how I could regain and maintain my good health. I read everything I could about it, altered my diet and exercised. Then, because I enjoyed the exercise and I felt so much better, I became a fitness professional so I could help others enjoy exercise and feel better, too.

I was supposed to work with healthy people but because my focus is working with people over 50 years of age, I never met any. Most "boomers" are taking at least one prescribed medication, and frequently many more, usually related to hypertension or cholesterol. For the past few years I've been working primarily with people living with Parkinson's disease and they are prescribed numerous medications, as are many of their partners or caregivers.

Because of all the medical care my friends receive, there are lots of stories about their visits to the doctors and about their treatments, but what really hits home with me is how this all affects their lives. How their activities are limited or the time it takes for medical appointments. There are family activities and other fun things they miss out on. I recently heard this referred to as "missed opportunities". 

While the physical, emotional, and financial aspects are easily acknowledged as having value, these lost opportunities frequently are not. But they do have value. They are about our lives.

Recently I discovered several books written by doctors and journalists about overdiagnosis and overtreatment, and they confirmed what I already suspected - that people were not only being tested and treated unnecessarily but that some were being harmed, too. They thought they were doing the right thing by following their doctors' orders but were unaware of the harms or that there might be other options, and they were unnecessarily enduring additional hardship. 

What is wonderful about Dr. Wen's book, When Doctor's Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests, is that she not only explains the problems but offers user-friendly suggestions on how to speak up and work with your doctor to ensure that you receive the treatment you need for the ailments you have and avoid medical treatment for the ones you don’t have

I am so pleased to see that more awareness is being directed to overdiagnosis and overtreatment.  I started writing a blog, Patients Are People Too, to direct other patients to the information that's out there so they can make better decisions. .

I never did get a definitive answer about my mystery ailment from any of the doctors I've seen over the years, so I guess the first one did me a favor. Because of him, I've been able to figure out what works best for me. I hope you'll be encouraged to do the same.

Sonia Gow is a patient—and person—and blogs at patientsarepeople.com.

Calling All Doctors and Announcing New Campaign for Total Transparency

Our healthcare system is broken and in dire need of reform. We all know the statistics: the U.S. spends $2.7 trillion on healthcare, 30% of which is waste in the form of unnecessary tests and unnecessary treatments. Conflicts of interest are rampant, with 94% of doctors reporting an affiliation with a pharmaceutical or device manufacturing company, and many more insidious influences including salaries being tied to “productivity”. Dozens of studies have shown that these conflicts of interest have a real impact on care, and are a major driver of excessive cost and avoidable harm.

On my recent book tour, I discovered an even bigger problem than the cost of care. There is a rampant and growing epidemic that we seldom discuss—the epidemic of fear. It’s understandable why patients are scared when they come to us. They’re not feeling well. They’re scared of what might happen.

But there’s another layer of fear, one that begins and ends with trust. When my mother was diagnosed with metastatic cancer, it took her months to find an oncologist she liked. One day, while trying to locate his office number online, she found a listing for him as a highly-paid consultant and speaker for a drug--the same chemotherapy drug that he’d put her on. This might have still been the right treatment for her, but it made her wonder, and it made her scared.

Traditionally, medicine has maintained a certain mystique. While there has always been information asymmetry, patients and doctors established longstanding relationships, and patients trusted that doctors had their best interests at heart. However, today’s medical landscape is very different. Few patients have longstanding relationships with their doctors. They have little to go on when deciding who to trust with their health, then are kept in the dark on matters ranging from cost of care to doctors’ motivations to necessity of tests and treatments.

In a time when they are already vulnerable and scared, patients have become even more afraid that they may not be receiving the right care for the right reasons. Doctors, too, have become afraid of their patients; much has been written about the fear of malpractice leading to hiding mistakes and practicing defensive medicine.

This mutual fear has led to distrust, disconnection and poor medical care. The driver of fear is secrecy and shame, and the antidote is honesty and transparency. Doctors are public servants whose duty is to be accountable to our patients. We need to break through the barrier of fear by sharing with our patients and the public who we are.

This is why I'm starting a new campaign, “Who’s My Doctor? The Total Transparency Manifesto.” Participating doctors produce a voluntary, public disclosure statement that includes the following: revenue streams of all payments, salary contribution and how salary is determined (i.e. hourly, RVU system, incentive/bonus), paid and unpaid board membership, investments, volunteer activities, professional interests, hobbies, and philosophy of practice.

Doctors already disclose much of this information when they apply for jobs and when they submit to medical journals. So why shouldn’t this information also be available to the public? Our patients have a right to know what influences their doctors may have that affect their care. It holds doctors accountable to our patients while at the same time humanizing us and reinforcing our role as socially responsible public servants.

Many patients may well decide that this information is irrelevant and never look at it. However, it should be available in a public, easily searchable database for those who do think it matters. Patients then have the option of identifying a doctor whose philosophies match their own. They can also help to encourage their doctor to participate in this project. 

Many doctors may have qualms about their information being available in such a public forum. However, in the era of Google and social media, much of this information can already be found online, and having a voluntary disclosure gives more control to the doctor. Also, experience with other transparency pilots such as Open Notes has demonstrated that openness leads to better communication, more trust, and better care, and it only follows that a more open relationship with our patients leads to less fear and less malpractice.

I believe that this form of radical transparency is paradigm changing. It is changing the culture of medicine from one of secrecy and mystery to one that is totally open to patients. It is a public demonstration that patient interests are primary, that reaffirms the reasons why each of us went into medicine. Every time I tell my patient about my decision to be a totally transparent doctor, every time I share my Total Transparency Manifesto, I are saying, I’m your doctor. I’m looking out for you. I’m free of influence that could affect you. Don't be afraid of me; trust me. I’ll be vulnerable with you.

Over the last few weeks, I’ve been discussing this idea with my colleagues and my patients. So far, I have myself and 10 other doctors who are willing to be totally transparent doctors. I’d love to have doctors of all specialties to participate, to say, I’m doing what I can to restore professionalism and break down the barrier of fear.

I’d love to have you join us. What you need to commit to is to write a Total Transparency Manifesto for the website (full website TBA; see more information and my manifesto on my webpage), tell your patients about it, and share your experience with me and the readers on this blog. How did it make you feel. Scared? Uncomfortable? Defensive? Liberated? And how did your patients respond?

And patients—what do you think? Please post your responses. Over the next few months, I’ll be posting my own experiences as well as the experiences of my fellow transparent doctors and our patients. Please join us in this new mission to counter fear and restore trust.

Goldilocks Medical Care: Not Too Little, Not Too Much….

In my last two blog posts, I discussed the harms of a new epidemic: too much medical care. We also don’t want the opposite, of enough care care. In fact, much of the driving force leading to overdiagnosis and overtreatment is this fear of rationing.

So what can you do to ensure that you obtain just the right amount of care?

It isn’t easy—if it were, if there an algorithm that would give us the answer, then we wouldn’t have the Goldilocks problem (“Is it too little? Too much?”).

Here are 5 suggestions that may help:

First and foremost, work in partnership with your doctor. The most critical key to getting good medial care is a trusting relationship between you and your doctor. This is not to say never question your doctor; but rather, develop a relationship of mutual respect such that you are the expert when it comes to your body, and the doctor is the expert when it comes to medicine.

Second, make sure your doctor listens. Study after study shows that the patient history will reveal the diagnosis in 80% of the cases, without the need for any tests or further interventions. If your doctor orders tests instead of listening to your story, that leads to unnecessary testing—and potential misdiagnoses. Prevent this by telling a good story, and making sure it’s heard.

Third, ask about your diagnosis. Understanding what you have is key to figuring out what should follow. Before you get any tests done, ask your doctor what he thinks you might have. This gives you some idea of what tests may be necessary, and also focuses your doctor to remember the important tests and have a justification for tests ordered.

Fourth, ask about every test done. Every single test has risks, so make sure you understand why each test is done. Ask about the risks. Ask about how it would change management: what happens if it’s negative? What happens if it’s positive? And, importantly—what happens if nothing is done at all? This helps you gauge how emergent (and also how necessary) a particular test is at this point in time.

Fifth, do your own research. This is particularly true when it comes to treatments. Look on the Internet and ask your friends and family. Be aware that not all information is equally credible, but at least this helps you formulate questions to ask your doctor. It might also help to look up your doctor and see if she has conflicts of interest that you may not be aware of: information about drug company affiliations, for example, can be found online. Write down questions, and ask them.

None of these suggestions are foolproof. These five steps can help begin the process for you and your doctor to work together to identify the right tests and treatments for you. If you have other thoughts or ideas that work, please write your comments below.

Where to Begin the Conversation on Overdiagnosis

One of the many takeaways from the recent Preventing Overdiagnosis Conference is that it’s hard for doctors to tell their patients that too much care is bad.

For so long, the rhetoric has been about the danger of too little care. Newspapers brim with stories of death from missed diagnosis and lack of access to care. TV shows glorify the detective-doctor who doesn’t give up and persists on ordering test after test in order to solve an esoteric case.

Over the last decade, there is mounting evidence illustrating the harms of overdiagnosis and overtreatment. Risk factors have been turned into diseases, and diseases are being created for the purpose of selling medications. Dartmouth’s Dr. Lisa Schwartz told the story of how GlaxoSmithKline created a new disease entity—restless leg syndrome—to find a new use of an existing medication that was going off patent. American Cancer Society’s Chief Medical Officer Dr. Otis Brawley discussed how hospitals offer “free” screening tests knowing that they will lead to false positives, thus creating a market for further testing and more care.

Who is to blamed for “selling sickness”? No doubt, big pharma and hospital corporations are culpable. They feed into patients’ fears. Maybe your doctor hasn’t heard of this “new” disease. Maybe she has financial incentives to prescribe you the rival medication. Why not take control of your health, and heed the advertisements to “ask your doctor about” the latest medication and the full-body CT scan?

There is another party that is just as guilty in the crime of disease mongering. It is doctors who are complicit with drug companies by speaking about “new” diseases and prescribing unnecessary medications. It is doctors who are complicit with hospitals by ordering unnecessary tests. It is doctors who instilled in our patients the blind faith in technology and the boundless optimism in treatments.

Combating overdiagnosis must begin with doctors acknowledging that we are part of the problem. The foundation of medical care is trust, and this trust is being eroded by financial incentives and conflicts of interest. We need to address this and reassure our patients that we are fully on their side.

Just as our profession stepped up to address critical issues such as access to care and medical error, we must have the courage to admit our contribution to the growing health threat of too much care. This will not be easy—but we must have the courage to reinstill trust, and do what’s right by our patients and our society.

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This article previously appeared in and reposted with permission from British Medical Journal's blog.

“Winding Back the Harms of Too Much Care”

I just returned from a thought-provoking conference at Dartmouth. Entitled Preventing Overdiagnosis: Winding Back the Harms of Too Much Care, and co-sponsored by Dartmouth University, British Medical Journal, Consumer Reports, and Australia’s Bond University, the conference raised many points that are rarely discussed.

Here are some of my favorite quotes:

“Risk factors have been turned into diseases.” Dr. Steve Woloshin discussed the absurdity of labeling us all with a “pre-disease”: doesn’t everyone all have some version of pre-hypertension, pre-diabetes, or even pre-death? More insidious is the promulgation of testing people who have no symptoms, despite of evidence of harm. American Cancer Society’s Chief Medical Officer Dr. Otis Brawley discussed how hospitals offer “free” screening tests knowing that they will lead to false positives, thus creating a market for more testing and more care.

“Diseases are being created for the purpose of selling medications.” Dr. Lisa Schwartz told the story of how GlaxoSmithKline created a new disease entity—restless leg syndrome—to find a new use of a Parkinson’s disease medication that was about to go off patent. Roy Moynihan showed his class spoof video of a new and dangerous epidemic.

“Ordinary experience is medicalized.” Dr. Allen Frances, a psychiatrist and Chair of the DSM4 task force, rails against the psychiatric profession for labeling people with diseases they don’t have. If you are grieving two weeks after the death of a spouse, you have depressive disorder; if your child is inquisitive and energetic, he has attention deficit disorder. Of course, watchful waiting is never the solution, but fortunately, there is a new and expensive medication for this disease.

“Language corrupts thought.” A diagnosis of “carcinoma-in-situ” brings up scary connotations and fuels the desire for aggressive treatment. However, our technologies have gotten so advanced that we are detecting many early cancers that, if left alone, may never grow or harm the patient. The National Cancer Institute recently proposed a change in terminology for cancer, and other conference speakers proposed other disease definitions that should be changed.

“We are practicing faith-based medicine that ignores the harms and exaggerates the benefits.” It is well-documented that medical journals bias in favor of positive results, and that there are many financial interests to promote the newest, latest medication or treatment. Stories abound about people who survived because of early detection of disease and new, experimental treatment. However, there are also many stories of people who experience serious side effects and fatalities from overdiagnosis and overtreatment. These counternarratives need to be told, and evidence for harm needs to be published.

“Overdiagnosis is a symptom of the same problem that drives underdiagnosis and misdiagnosis.” In the discussion of overdiagnosis, it’s important not to forget that there are other pressing issues too, including medical error and lack of access to healthcare. The medical industrial complex is at fault here, too, and doctors need to assume our social responsibility and moral imperative to do what’s best for our patients.

“More care isn’t better care; it’s just more care.” In the words of my hero, cardiologist and Nobel Peace Prize winner Dr. Bernard Lown: “Overtreatment harms patients, thereby negating the first principle of doctoring, primum non nocere.” Our goal in medicine should be to do “as much as possible for the patient, as little as possible to the patient.”

There will be many challenges ahead for conference attendees, including the difficulty of framing and discussing the problems of overdiagnosis and overtreatment. Much of this conversation will continue at the Lown Institute's Right Care Alliance conference in December. My next few blog articles will address these difficulties. Stay tuned, and please feel free to contribute your thoughts below!