They missed the real story, which isn’t the governor’s prostate cancer but rather the fact that he has chosen to be treated at all. Given a choice between no treatment and radiation therapy, it’s a bit of a toss-up as to which is more likely to do him harm, and it’s entirely possible he didn’t really understand there was a choice.

That might seem like an outrageous claim, but here’s why it’s not. The governor’s office has released precious few details about his diagnosis, but his doctor did say that the cancer was “early-stage” and “localized.” About half of prostate cancers that fall into that category—early-stage and localized—never would have caused symptoms in the patient’s lifetime, even if they were left untreated.

Only about 3 percent of deaths among men are due to prostate cancer—probably less than most people imagine. But a lot of men have prostate cancer and never know it. Autopsy studies of men who died of other causes have found that about 60 percent of men in their 70s have prostate cancer that was not diagnosed. For men in their 80s, that number goes up to 70 percent. In other words, more men die with prostate cancer than from it. That means there’s a good chance the governor has been overdiagnosed and is going through treatment for a cancer that would never have bothered him, or that could have been treated successfully at a later date if and when it started causing symptoms.

To make matters worse, Brown’s radiation treatment has a good shot at turning Governor Healthy into a patient who will suffer serious, life-altering side effects. The most common, long-lasting side effects of radiation therapy are bloody stools or rectal pain and other bowel problems; urinary obstruction, pain, or irritation, and other urinary difficulties; and erectile dysfunction. About half of men who undergo radiation therapy suffer one or more of these problems long-term. A few even die from their treatment.

This is the terrible conundrum that many men face when diagnosed with low-risk, localized prostate cancer. Should they be treated, and risk becoming candidates for Viagra and Depends? Or should they forego treatment and face the smaller risk that their cancer will go on to become aggressive and maybe even kill them?

Such personal decisions have implications far beyond the health of California’s governor. The state and private insurers could save a lot of money by refusing to pay for treatment for low-risk, localized prostate cancer, and the end result would be only a few additional deaths per year from prostate cancer, if any. Payers could save even more by refusing to cover the P.S.A. test, a blood test that is used to screen asymptomatic men for signs of early prostate cancer. Since it was first put into widespread use in the 1990s, the P.S.A. test has led more than a million men to be diagnosed and treated for a cancer that could have been ignored; many experts now believe it should not be used as a screening test.

Of course, no insurer would dare to make such a draconian move. There is another way to give men choices, reduce the number of men who are harmed by overdiagnosis and overtreatment, and save some money. It’s called “shared decision making.” In this process, doctors provide patients with digestible, balanced information about the potential benefits and harms not only of the P.S.A. test and prostate cancer treatment but also of a wide variety of elective procedures and tests. Then, the doctor and the informed patient decide together how to proceed.

That’s not what usually happens. In the case of the P.S.A. test, one-third of men who get one are never asked if they want it. Of men who are asked, two-thirds say their doctor failed to mention possible downsides that result from treatment that can follow screening.

When doctors share decisions with their patients, by first offering them accurate, balanced information, and then asking them about their values and preferences, patients often make very different choices. In the case of prostate cancer, many men choose to forego the P.S.A. test. Men who have been diagnosed with a localized cancer often choose not to be treated, but rather to watch and wait.

Let’s hope the governor is one of the lucky ones whose cure does not turn out to be worse than the disease. An even better outcome would be if he also realizes the need to get shared decision making into widespread practice.

The post Should Jerry Brown Just Ignore His Cancer? appeared first on Zócalo Public Square.

We reached Kaiser, I had my vitals tested, my temperature taken, and a throat depressor and pin light used to analyze my tonsils. My tonsils weren’t that bad, the doctor said. Take some antibiotics and go home and rest. But I was very disappointed. I wanted those tonsils out.

You could blame TV for this. By age 7, I’d absorbed the TV-rerun trope of the tonsillitis episode. It always ended with Cindy Brady, Eddie Munster, or the Fonz in bed without tonsils and with a big bowl of ice cream. As far as I could tell, there was little risk and a big reward. My pain could be replaced by mint chocolate chip. But now the verdict from Kaiser was in—and it was depressingly ice-cream-free.

For years afterwards, every time I got a cold, my tonsils got inflamed, and I blamed Kaiser for being too cheap to yank them. I spent a few decades believing that I’d received subpar care. Actually, though, what we need is precisely more doctors like the ones who treated me at Kaiser.

If you want an example of avoidable, wasteful care, tonsillectomies are Exhibit A. Dr. David Goodman of the Dartmouth Atlas, which measures variability in care and healthcare costs, has gone so far as to call tonsillectomies “a silent epidemic of unnecessary care,” according to an article in The Washington Post.

Here’s what he’s talking about: Between 1996 and 2006, the number of tonsillectomies performed in this country spiked by 74 percent. About half a million children will have a tonsillectomy this year, making it the most common surgery performed on children requiring general anesthesia. It’s held that title for a century.

According to Goodman, few, if any, of the supposed benefits of the tonsillectomy are backed up by science. This is where The Brady Bunch collides with our heavy healthcare burden—and where we as consumers of healthcare have to make some decisions. Do we go with what’s always been done, to alleviate temporary pain? Or do we take a risk, wait and see, and avoid skyrocketing healthcare costs and unnecessary care?

Awareness of the arbitrariness of tonsillectomies goes back decades. In 1938, Sir Allison Glover, an English doctor researching the procedure and its use, found that the rate of tonsillectomies depended almost entirely on each doctor’s preference. In the 1960s and 1970s, Dr. Jack Wennberg, a pioneering health researcher, found the same thing: In one Vermont town, 70 percent of the children had their tonsils out. In the next town over, only about 20 percent of the kids did.

What gives? According to Dr. Wennberg, in a transcript from a 2008 interview with the Dartmouth Institute for Health Policy and Clinical Practice, the culprit was the doctor. A surgeon who’s a proponent of a certain kind of surgery can influence a family’s decision of what to do. And with a lack of double-blind randomized-controlled trials on tonsillectomies to back up or guide doctors on how to proceed, we’ve all continued to fly blind.

Now, for some kids, there does appear to be a marked and measurable improvement in quality of life after tonsillectomy. But for kids like me—kids with pain and trouble swallowing, but no recurrent infections and no trouble sleeping through the night—a tonsillectomy is going to cut the average number of sore throats from three per year to two. That’s right: For a cost of anywhere from $5,200 in 2007 to $6,082 per procedure in Iowa in 2011—somewhere between $2.6 billion and $3.04 billion a year—a tonsillectomy can save your child from having one sore throat, according to a 2009 review of the medical literature by the Cochrane Library.

And that’s not all of it: Tonsillectomy is a major surgery, requiring children to be put under general anesthesia. The American Academy of Otolaryngology found that about one in 16,000 people who have tonsillectomies die from complications.

“Simply counting spending, in the narrow financial sense, misses the real cost of giving patients care that they may not want,” says Amitabh Chandra, a healthcare economist at the Kennedy School of Government at Harvard University. “Tonsillectomies are a metaphor for a wide range of treatments, such as radical prostatectomies, where the side effects of incontinence and impotence likely swamp the dollar cost of the treatment.”

By the time I developed tonsillitis in the 1980s, tonsillectomy rates were at their lowest in history. But they’ve since rebounded. Goodman, of the Darthmouth Atlas, believes it’s provider bias that accounts for the surge in operations. Another factor is patients: They, or at least their parents, want the treatment. As Dr. Emily Boss, assistant professor of otolaryngology at Johns Hopkins University and a pediatric ear, nose, and throat surgeon, told me, “What we don’t capture [in the research] is what it’s like as a surgeon to sit across from a family with a child who has significant breathing problems and is tired all the time.”

Many of these families are made up of people like me (or a younger me)—people who equate more care with better care. I spent every winter for years cursing Kaiser, insisting that they’d done me a disservice in the name of cutting healthcare costs. Then, one winter a few years ago, I spoke to a nurse who suggested that it was the cold medicine I was taking that was causing the inflammation because it was drying out my throat too much.

I changed medicines and haven’t had a tonsil infection since.

So now I know that appropriate care, in my case, was less care. But for most of us it’s very hard to tell. “Healthcare is almost the only industry in the U.S. where people can’t tell great service from bad service,” said Gerald Kominski, professor of health policy and management at the UCLA Fielding School of Public Health. “If healthcare were cell phones, you’d have people out there with iPhones and people with those old phones the size of a brick. And people would be saying, ‘No no no. I like my brick. It works great. I need it.’”

Plus you can sell a lot to a kid if you offer ice cream.

The post How About Ice Cream <em>Without</em> the Tonsillectomy? appeared first on Zócalo Public Square.

But the reality is that most of us are going to die after spending the last three to 10 years of our lives suffering from increasing frailty and dementia—and America is totally unprepared for the number of people who will go through this in the next few decades as the baby boomers age.

“We haven’t thought about the medical care we need, or the medical care that we prefer—which isn’t often the kind of care we receive,” said Brownlee. This is true for the nation broadly and also for individuals and families.

Take a patient Brownlee called “Helen T.” Helen was admitted to Boston’s Massachusetts General Hospital emergency room with a broken hip; she was suffering from advanced Alzheimer’s and had an advance directive indicating that she didn’t want intubation or CPR. But her daughters were told by a surgeon that unless their mother was operated on, she would be in a lot of pain—and although the operation required intubation, the surgeon said that the advance directive could be reversed temporarily. Her daughters agreed to the surgery, beginning a two-month-long odyssey in which Helen was shuttled back and forth from her nursing home to the ICU to receive many different treatments beyond simply repairing her hip, including a catheterization, a cardiac stent, multiple intubations, treatment for pneumonia and a urinary tract infection, and a tracheostomy to insert breathing and feeding tubes.

Ultimately, a palliative care team was brought in, and Helen’s daughters agreed that her mother wouldn’t want any of this treatment; she died peacefully in hospice surrounded by her children and grandchildren.

“Every person involved in Helen’s care wanted what was best for her” and were aware of her advance directives, said Brownlee. But there were many points along the way where different decisions could have been made. Cases like these, she said, are about communication and denial.

Doctors present families and patients with choices that seem stark: death or treatment. But they aren’t upfront in letting people know when treatment won’t improve a patient’s quality of life. Nor do they normally present another option: to make the patient as comfortable as possible as he or she dies. The problem is compounded by various specialists who don’t see the patient as a whole person but instead see individual issues that can be resolved.

Nobody, said Brownlee, told Helen’s daughters, “‘We can make her comfortable without surgery’—nobody said that.”

“Why do people find themselves on this train that leads toward more and more and more [care], even if they sign an advance directive?” she said.

People think more is better when it comes to medicine—more drugs, more time in the hospital, more treatments. So part of it is patient preference. But a great deal depends on where you live, and what hospital you’re admitted to. Within California, there are huge differences between how patients are cared for at the end of their lives in the northern and southern parts of the state, Brownlee said.

According to Brownlee, in 2007 chronically ill patients at UCLA Medical Center spent an average of 14 days in the ICU in the last six months of their lives—more than three times longer than patients at UCSF Medical Center, and longer, too, than patients at Cedars-Sinai, who spend an average of 9.6 days in the ICU.

The use of palliative and hospice care has risen over the past decade, and fewer people are dying in hospitals, said Brownlee, but there remains a tremendous gap between the care patients want and the care they receive.

In 2003, 33.8 percent of patients in California died in the hospital. In 2007, that number dropped to 31 percent. But the average in the rest of the country is 28 percent. And in the Los Angeles area you are significantly more likely to die in the hospital or after spending time in the ICU than you are in other areas of the state.

It’s counterintuitive, but this regional variation is a result of greater availability of ICU beds and hospital beds. In areas where there are more beds per capita, more people are admitted to the hospital, and are thus more likely to die in the hospital. As a result of a post-World War II building boom, California (and Southern California in particular) has many small hospitals. Los Angeles has more doctors per capita than any other place in the country, said Brownlee.

And because of the economics of our healthcare system, hospitals, much like hotels, don’t make money with empty beds.

So how can we move toward a system that gives people the care they want, rather than the care determined by the region where they live or the number of beds in the nearest hospital?

“In my ideal world I imagine a health system in which patients no longer feel like widgets, and doctors no longer feel like factory workers,” said Brownlee. She wants to see “a world where doctors really talk to their patients,” where care shifts away from hospitals and into the home, and where primary care doctors have more time to treat their patients.

She also thinks we need more trust between doctors and patients. Doctors, she said, “see you as a walking lawsuit waiting to happen”—and you can’t trust someone you think wants to sue you.

Every time you go to the hospital or a doctor’s office, she advised the audience, you should think, “No decision about me without me.”

She also said that a fundamental shift is needed in how patients evaluate the care they receive; we tend to think that the doctor who gives the most tests and uses the most technology cares the most.

At stake isn’t just our health and comfort but also the economic future of the nation, said Brownlee—which is why we all need to start talking and thinking about death now, before it’s too late.

In the question-and-answer session, audience members shared their experiences with terminally ill and elderly family members and asked Brownlee where to go for more information on regional variations in end-of-life care.

Brownlee said that she is preparing reports for the California HealthCare Foundation on end-of-life care, cancer care, and variation rates of certain types of procedures all over the state; these will be available on the foundation’s website early next year.

Is there any financial incentive for hospitals not to offer palliative care? “Hospitals are paid for offering more care, not better care,” said Brownlee, adding that the Affordable Care Act will change that to some degree—but that patient demand is what will ultimately force hospitals to offer more palliative care.

Brownlee believes that change can come to America’s end-of-life healthcare. “It’s going to take a lot of patient voices, and a lot of leader physician voices,” she said.

The post You Might Wanna Die Elsewhere appeared first on Zócalo Public Square.

In some parts of California, you’re likely to have all sorts of medical treatments at the end of your life and die in a hospital. In other parts of California, you’re likelier to die at home with less intervention. Such disparities can be found across the country, and they are not indicative, as a rule, of patient preferences. They’re indicative of differences in mindsets and habits among healthcare providers. For most of us, “good” end-of-life care means the kind of care you want, but it can be hard to know if you live in a part of the country where that’s what you’re likely to get. In advance of the Zócalo event “Does Where You Live Determine How You Die?” we asked several healthcare scholars for tips: how do you know if you live in a place that offers good end-of-life care?

You can’t know for sure, but there are important indicators

No matter where you live, if you have been diagnosed with an illness such as stage III or IV cancer, emphysema, heart failure, kidney failure, or dementia–or if your loved one is in the ICU with a life-threatening illness requiring a breathing machine for more than four days–the message you should be hearing from your doctors is “Hope for the best; prepare for the worst.” Beware when you hear them say, “We are doing everything we can.” That’s often doctor-speak for “S/he’s likely to die no matter what we do.”

Your health system should encourage early referral to palliative care if you or your loved one has a serious chronic illness. “Early” means “at the same time you have been diagnosed,” not “after curative treatment has failed.” Palliative care providers, typically a team including doctors, nurses, social workers, chaplains, and other professionals, can work together with your other doctors to address key domains of care often forgotten by the others–symptom management, tailoring treatment to meet your own personal goals, and spiritual support–while you are receiving treatment aimed at prolonging your life.

If you are interested in your region’s track record for hospice use and ICU use for patient who died–types of care trajectories that are on opposite sides of the spectrum–check out the Dartmouth Atlas data tools at www.dartmouthatlas.org. Although this will not tell you anything about the quality of your providers, it’s important to know that simply by dint of living in Los Angeles you may be more likely to die hooked to machines than if you live in San Francisco.

Amber E. Barnato M.D., M.P.H., M.S., is associate professor of Medicine, Clinical and Translational Science, and Health Policy and Management at the University of Pittsburgh.

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Forget what the regional norm might be–the key is to make your preferences abundantly clear

Patients near the end of life have many treatment possibilities–from aggressive medical interventions to comfort care. But in some areas of the country, the choice to receive less aggressive care is not always a clear option. We have known for a long time that there is marked geographic variation in the delivery of aggressive versus palliative measures. Patient preferences do not seem to drive this variation. For example, surveys find that many more patients prefer to receive palliative care than actually receive it.

In a nationally representative study of 3,000 deaths, we found that patients who lived in regions of the country with aggressive end-of-life practice styles were less likely to die in the hospital and more likely to receive hospice care if they had prepared a written advance directive. Patients can prepare living wills to document preferences for the use or avoidance of life-sustaining treatments such as feeding tube placement and CPR so that physicians and family members can make decisions that reflect patient preferences when the patient is no longer competent to make these decisions.

Our results suggest that advance directives are most effective when one prefers treatment that is different from the local norms. By preparing an advance directive and discussing treatment preferences with family members, friends, or physicians, patients can help to ensure that they receive the type of end-of-life care that they prefer, regardless of the prevailing practices of the region where they live.

Lauren Hersch Nicholas, Ph.D. is a health economist at the Institute for Social Research, University of Michigan and a research affiliate of the UM Center for Healthcare Outcomes and Policy.

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There are clues–and we can all help to change the culture of end-of-life care

Good end-of-life care for me means at least two things. First, I don’t want to spend my last days in unnecessary pain. I also don’t want to go through a vicious cycle of hospitalization and ICU stays. That means I would need to live in a place where the indispensable value of palliative and hospice care is recognized and infused throughout the overall healthcare culture and system. Second, I want to be cared for by healthcare professionals who respect my autonomy. I don’t want them to make assumptions about what I want or think based on my race, ethnicity, gender, wealth, education, or religion. Instead, I want doctors, nurses, and social workers to take time to listen to me, talk to me as a person and not just another dying patient, and try their best to respect my wishes. This means I would need to live in a place where thoughtful end-of-life care conversations take place on an ongoing basis.

Where I live, Milwaukee, Wisconsin, is considered average in terms of access to hospice care and intensity of aggressive procedures performed at hospitals in the U.S. I know this because there are very helpful resources such as the Dartmouth Atlas Project, which has documented quality and utilization of healthcare resources available in every region of the U.S. The Atlas shows the powerful effect of where we live on the types of care we receive at the end of life. I also know that a new statewide initiative, Honoring Choices Wisconsin, is being launched to promote advance care planning that is modeled after the successful initiative in La Cross, Wisconsin. Although it takes a lot of effort and time to change the culture and system of end-of-life care, I believe that many changes are occurring across the nation and likely to change the face of the end of life care within the next decade.

Jung Kwak is assistant professor at the University of Wisconsin-Milwaukee. Her research and teaching interests include cultural diversity and surrogate decision-making at the end of life.

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For now, we have indicators, but for tomorrow, we must have a responsive patient-centered system

Why is it that, in some U.S. states, 40 percent of nursing home residents with severe functional impairment get transferred from one healthcare setting to another (such as to a hospital) during their last 90 days of life, while, in other states, only 3 percent of dying nursing home residents are forced to undergo such treatment? Why should we be concerned with this variation? Because transitions of dying patients from one setting to another are associated with poor quality of care and unnecessary suffering.

Why such disparities? It is not patient preferences. It is not that patients are sicker in one state compared to another. The important determinants are the culture of decision-making and how we pay for healthcare. Let me give you an example. Some states pay for a nursing home to keep a “bed”–a space–available for a patient while that patient is in the hospital, so that if the patient returns to the nursing home afterward, there’s space for him or her. In the past, this was important in order safeguard access to nursing-home care. But there is an unintended consequence: it gives nursing homes an incentive to send away people to the hospital. The nursing home gets paid for the bed anyway, and, if a resident returns after a three-day stay in the hospital, then she qualifies for Medicare skilled services, for which the home can charge a much higher rate. Incentives matter.

In a recent study, Dr. Amber Barnato of the University of Pittsburgh and colleagues found that decision-making processes in an ICU with an aggressive pattern of care differ significantly from those in an ICU with a less aggressive pattern of care. Healthcare providers in the lower intensity ICU worked with the patient and family to arrive at a decision that respects patient’s choice. The key to good end-of-life care is patient-centered care–a process of communication and shared decision-making that allows the dying patient and family to set goals and arrive at medical care that respects those goals.

How can you know whether you live in a region of country that has high quality end-of-life care–one in which your symptoms are controlled as you like, your treatment wishes are honored, you are treated with respect, and emotional support is provided? Unfortunately, we don’t have publicly reported data on that. The Dartmouth Atlas of Health Care has some useful information concerning ICU utilization, hospice referral, and other measures to examine hospital performance at the close of life. But the key data that is missing is whether medical care respected a patient’s values and goals, whether a patient received her desired level of symptom control, and how much emotional support the patient and family received. Such information would require speaking with the patient or the proxy decision-maker for that patient. And it’s time we did. As consumers, we must demand that hospitals, nursing homes, and healthcare providers promote patient-centered care.

Joan M. Teno, M.D., M.S. is professor of health services, policy, and practice at the Warren Alpert School of Medicine at Brown University.

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Most of us know that the U.S. healthcare system is the most expensive in the world, even though it underperforms many of its less expensive counterparts. What fewer of us know is how much of the cost is due to unnecessary medical testing. PricewaterhouseCoopers’ Health Research Institute has found that “excess tests” are costing the U.S. healthcare system $200 billion a year, roughly 10 percent of what the system spends annually.

According to Miriam Laugesen, a health policy expert and assistant professor at Columbia University’s Mailman School of Public Health, superfluous testing occurs in several incarnations. There is repetitive testing, when a test has already been done elsewhere but the patent’s record is incomplete or missing. There is misplaced testing, when a test intended for one specific population (one susceptible to a rare hereditary condition, for example) gets applied to all patients indiscriminately. There is testing because of patient pressure or fear of being sued.

And then there is testing because of the professional mindset of healthcare providers. John Schumann, a general internist who blogs at GlassHospital.com, notes that modern medicine embraces the idea of using every tool at your disposal. “There’s a culture in American medicine of no stone left unturned,” he says. “Residents are quick to learn they have to have their bases covered. They don’t want to look foolish on rounds.”

This means that most residents–doctors-in-training–at hospitals around the country are ordering a full round of blood tests on every patient in the hospital every morning, even when it’s not clinically necessary. These can cost from $50 to $200 each. Multiplied across every teaching hospital around the country, that figure runs into the billions. Perhaps more importantly, it’s ingraining a culture of over-testing.

It’s not just new doctors ordering tests. “We all do it,” Schumann admits. “And we all look for justifying ordering a test.” To curb over-testing, Schumann thinks doctors need to be incentivized or penalized in their test-ordering. He points to Medicare as a case study of restraint. If a physician can’t offer a good justification for a test, Medicare doesn’t cover it. The system then allows a doctor to reflect on his reasons for ordering a test and either pinpoint a justifying diagnosis or acknowledge that the test is superfluous.

Curbing over-testing is a message that has been resounding lately. Nine medical societies–including the American Board of Internal Medicine–put out a list this month of 45 common tests and procedures that doctors should perform less often. The initiative, Choosing Wisely, asks physicians and patients to limit, among other things, antibiotic prescriptions for sinus distress, cardiac imaging in asymptomatic patients, and imaging for most back pain.

Whether the 374,000 physicians represented by these professional societies will adhere to the guidelines is of course far from certain, and the societies can’t enforce the recommendations, but the message at least is loud and clear. Reinforcing it in the academic world is Steven Weinberger, CEO of the American College of Physicians. In a recent letter published in Annals of Internal Medicine, he called for the emphasis of “stewardship of resources” and “practicing in a cost-conscious fashion.” He says such cost consciousness should even be added as a seventh clinical competency-core medical training guidelines set by the Accreditation Council for Graduate Medical Education. Weinberger’s idea would have doctors trained early on to decrease unnecessary care, saving everyone time, money, and resources.

The money saved isn’t just that of the insurer. Columbia’s Laugesen thinks patients might hesitate to order so many tests if they think more about how large a share of the costs they themselves would have to pay. So the next time you go to the doctor, talk out your options and ask for the doctor’s medical opinion. You could be saving yourself–and everyone else–a lot of money.

Aleszu Bajak is a writer in Buenos Aires.

*Photo courtesy of Lorenzo Sernicola.

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It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen–that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this–that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.

But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight–or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.

The post How Doctors Die appeared first on Zócalo Public Square.

“How many of you have had an elective surgery?” she asked a full house at an event co-sponsored by Zócalo Public Square and the California HealthCare Foundation, prompting about a third of the crowd to raise their hands.

Brownlee, the acting director of the health policy program at the New America Foundation, defined elective procedures as any in which the patient has a choice. Prostate tests and mammograms are elective, she said, as are many bypass surgeries and joint replacement procedures. And too often, she argued, patients don’t have the information they need to make the right decision for themselves.

The Prostate Puzzle

Brownlee opened her address by discussing the prostate-specific antigen, or PSA, test, which is recommended for men over 50 to test for early-stage prostate cancer. As the lead medical writer for U.S. News & World Report in the 1990s, she discovered some troubling statistics about the success of the PSA test.

One-third of men who received the test weren’t informed that it was happening until after the fact, she found. And two-thirds of men who subsequently received treatment for prostate cancer – a procedure that can have major side effects including incontinence and impotence – said they didn’t receive enough information to make a good decision for themselves.

Most importantly, she said, “there wasn’t any evidence that giving men a PSA test actually reduced their risk of dying prematurely.”

Furthermore, the recommendations patients receive from their doctors are dictated by where they live. Residents of San Luis Obispo undergo treatment for prostate cancer at 10 times the rate of many other communities, she said, citing data from the renowned Dartmouth Health Atlas.

Yet despite the verified disparities and concerns about the procedure, the majority of doctors still give routine PSA tests without discussing other options, and most patients still don’t have the information they need to decide. But, Brownlee said, “a revolution is coming.”

The History of Tonsil Removal

Brownlee spent a few moments tracing the evolution of how the medical community treats sore throats in children. The majority of adults over 50, she said, had their tonsils removed as children.

A study conducted in England demonstrated that far too many children were undergoing tonsillectomies, she said. A group of students were examined by a doctor, who concluded about 40 percent of them needed their tonsils removed. The school then sent the students deemed healthy to another doctor, who determined that 40 percent of the remaining group needed their tonsils removed. When a third doctor examined the remaining students, he concluded that 40 percent needed tonsillectomies.

“The expectation by physicians was that about 40 percent of them needed their tonsils out, and so that’s what they found,” Brownlee said. “It gives new meaning to the phrase ‘No child left behind.’”

Today, very few children have their tonsils removed, as more and more doctors conclude that there are other, less risky options to treat chronic sore throats. But meanwhile, other similarly unnecessary treatments have become more popular than ever. For example, mammograms are now recommended every year for women over 40, but Brownlee said the data does not show the procedure routinely prevents an early death.

Replacing Informed Consent

Before undergoing any elective procedure, patients must sign a legal notice of “informed consent,” which states that they understand their options and have made an educated decision to take a particular path. But those documents are filled with legal jargon and don’t represent a true agreement between doctors and patients, Brownlee said.

And since elective procedures for Medicare patients cost U.S. taxpayers many billions of dollars a year, it’s crucial that those procedures are what patients really want.

The evidence shows that “when [patients] are informed, they often make different choices,” she said. “Doctors are often not very good at explaining things in a way we can understand.”

The “revolution” that Brownlee spoke of is the medical community slowly turning away from the informed consent model and toward what she calls shared decision-making. That requires work from both doctors and patients, she said.

For patients, Brownlee recommended a variety of steps. She emphasized the importance of soliciting second opinions, as well as asking for a patient decision aid, a brochure that walks through all a patient’s options and what they mean.

All patients should ask three questions before they undergo an elective test or procedure, she concluded: What are my options? Is doing nothing one of my options? What are the risks of each of the options, and what are the possible benefits?

In other words, she said, “Trust, but verify.”

For event photos, please click here.
For full video, please click here.
To read Anthony Iton’s essay on how zip code can determine lifespan, click here.
For four experts’ opinions on how to be better patients, please click here.
To read Brownlee’s essay on how health care can be more harm than help, click here.
Read Brownlee’s “In The Green Room” interview here.

*Photos by Aaron Salcido.

The post The Danger of Too Much Health Care appeared first on Zócalo Public Square.

Engage in Shared Decision Making

A basic right of every patient is to be fully informed and involved in all aspects of their health care. By engaging in shared decision making when there is more than one reasonable medical option, patients and caregivers collaborate to make a health care decision, ensuring that this basic right is respected. The recently published “Salzburg Statement on Shared Decision Making” elaborates on the role patients should play in the decision-making process by calling on patients to:

• Speak up about their concerns, questions, and what’s important to them
• Recognize that they have a right to be equal participants in their care
• Seek and use high-quality health information

Patients must realize the power and say they have with regards to their health care. If a test or procedure does not align with one’s personal preferences and goals, then it is indeed appropriate for a patient to say “no, thanks” to their caregiver. The push for shared medical decision making aims to elicit patient preferences so that decisions are made together, rather than patients feeling as if they must comply with “the doctor’s orders.” In addition, a patient should know the answers to the following three questions before any decision is made:

• “Do I know my options?”
• “Do I know the potential benefits and harms of the options?”
• “Do I know the likelihood of possible outcomes that are important to me?”

Shared decision making is a two-way street; both patient and caregiver must engage thoroughly in order for the best possible health outcome to arise. Patients should play an active and direct role in their health care because the patient, not the caregiver, will be the one living with the results of any medical decision.

Dr. Michael Barry is a professor of Medicine at Harvard Medical School and chief of the general medicine unit at Massachusetts General Hospital.

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Do Everything In Moderation

What you do “for” or “to” yourself is probably going to be more important than what any doctor can do for you.

One of my favorite sources is a physician in the Midwest who tells his residents: “If you want to be healthy, do all things in moderation. And stay the hell away from people like us.”

Too often, worried patients go for multiple tests, which can lead to false positives and unnecessary treatments. While some people in this country receive too little health care (the uninsured and underinsured) the well insured (including Medicare patients) often are over-treated and over-medicated. As a result, they are exposed to needless risks.

Unnecessary hospitalizations are a major problem. Hospitals can be dangerous places: if patients don’t really need to be in the hospital, they are exposing themselves to hospital-acquired infections, medication mix-ups, and other medical errors that lead to serious injuries and death. People who work in our hospitals are not sloppy or unconcerned. But in our health care system, care is not well coordinated, and hospitals are very busy. Many health care providers are multi-tasking. And the systems in our hospitals do not give doctors and nurses the support that they need to do their job well.

Maggie Mahar is a fellow at The Century Foundation. She is the author of Money-Driven Medicine: The Real Reason Health Care Costs So Much and Bull! A History of the Boom, 1982-1999 and writes the blog HealthBeatM.

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Make Sure You Understand, Ask Questions If You Don’t

Taking control of our own health care is an essential personal responsibility. The increasing complexity of our already hard-to-navigate health system makes our job as patients more difficult and more important than ever to improving our health. So how can we be better patients? Here are a few ideas:

• Be a source of facts.

Clinicians make diagnoses and recommendations based on facts, and we as patients are an important source of those facts. Bringing this information and communicating it clearly to your clinician is crucial. Know and bring your personal history and family history. And bring a list of your current and past medications. Giving your doctor or nurse as much relevant information as possible is one of the most important duties for patients.

• We don’t need to be doctors and nurses.

Although our input is essential, it’s not the patient’s job to research our symptoms, reach conclusions and bring those conclusions to our caregivers. Bringing our own self-diagnoses can limit our ability to hear, process and understand what the doctor or nurse is telling us.

• Take notes, ask questions, clarify and understand.

Seeing a health care provider can be stressful, especially when you’re worried about your health, and remembering everything from a stressful encounter is hard. Bring a notebook. Jot down what you think is important and ask the clinician what they think you should write down. Ask clarifying questions. If you don’t understand something immediately, ask the doctor or nurse to explain it in a way you can understand. Don’t leave with lingering questions or uncertainty. Understanding is a two-way street, and you and your clinician share the responsibility.

Maureen Bisognano is president and CEO of the Institute for Healthcare Improvement. She is also an instructor of Medicine at Harvard Medical School and a research associate in the Brigham and Women’s Hospital Division of Social Medicine and Health Inequalities.

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Be Informed and Active

In this era of health care reform, it will be incredibly important for patients to be informed about all the incredible and exciting change that is to come. Soon, 32 million individuals will be added to the rolls of the insured. A large group of these individuals may never have had health insurance in the past, and as such, they may not be familiar with how to maneuver within an increasingly complex health care system. Perhaps the most vulnerable among these are minorities and those with limited-English proficiency. Latinos, our nation’s fastest growing and now largest minority group, will need to understand how to make the most of this new opportunity and become activated, insured health care consumers. As a Puerto Rican physician whose patient population has always been between 60 to 85 percent Latino, I have witnessed several issues that we must address with our community to assure they can take charge of their health.

First, we must communicate the importance of health, wellness and personal responsibility. I say this fully understanding many of the challenges our communities face, but with the sense that we can do more to address the current epidemics of obesity and diabetes that cannot be prevented in the doctor’s office.

Second, we must encourage members of our community to be active partners in their care. In my experience, many Latino patients don’t want to bother the doctor after hours if there is an emergency; they don’t feel comfortable asking questions or communicating when they don’t understand something; and oftentimes they may not be sure what medications they take or what tests they’ve had. We must empower our community to be active patients–with their medications, previous tests, questions and concerns all at the ready when they see their health care provider.

Finally, we must orient patients to how this complex health care system works so they can navigate it effectively. These are issues that are important for all patients, but may be particularly important for minorities and patients with limited English proficiency: those who may be made especially vulnerable by low general and health literacy, lack of previous experience with health insurance, cultural concerns around asking questions and limited knowledge about prevention, health and wellness.

Dr. Joseph Betancourt is director of the Disparities Solutions Center as well as director of Multicultural Education at Massachusetts General Hospital. He is also senior scientist at James J. Mongan, M.D. Institute for Health Policy and associate professor of Medicine at Harvard Medical School.

*Photo courtesy of Image_D.

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Los Angeles doctors are plentiful, and Angelenos have some of the highest rates of visits to doctors and specialists in the nation. So you’d expect Angelenos to get the very best health care. But do they really?

Look at the numbers, and you might notice that Angelenos are getting a lot of health care, but they aren’t necessarily getting a whole lot of health. The Dartmouth Atlas of Health Care offers a snapshot of the care Medicare beneficiaries receive across the country. The statistics on who’s getting what are very different from place to place. Take the example of back surgery. For those suffering from all-too-common lower back pain, surgery isn’t always a good option. In fact, recent research suggests that other, more conservative options, such as physical therapy, are often much better for relief. Yet Medicare beneficiaries in Los Angeles are 40 percent more likely to undergo back surgery than residents of Fresno. And they are almost two and a half times as likely to have back surgery as residents of Honolulu, Hawaii.

We see similar numbers when it comes to the treatment of an enlarged prostate. This is a common condition among older men and may be treated by transurethral resection or removal of the prostate (TURP). But other options for treatment exist, and while TURP may provide the greatest chance for relief of symptoms associated with an enlarged prostate, it also carries a greater chance of complications and side effects like incontinence and sexual impairment. In treatment-happy Los Angeles, men are almost twice as likely to undergo TURP for for an enlarged prostrate as men in Alameda, Calif. And they’re two and a half times more likely to undergo the surgery as men in Ogden, Utah.

Does that mean Angelenos are reliably over-treated? Actually, no. Many who might benefit from hip replacements, for instance, aren’t getting them. Clinical trials have shown that about 90 percent of patients report being happy with their new hips and feeling better overall. Yet residents of Napa are 50 percent more likely to receive hip replacements than residents of Los Angeles.

The “right” rate of any procedure is going the one that is aligned with the preferences of well-informed patients. Often, patients just don’t know enough to make a sound decision. Los Angeles residents experience some of the highest rates of aggressive end-of-life care in the country, but is that really what they want? Medicare beneficiaries in their last six months of life who were treated at UCLA Medical Center saw an average of 11 different physicians and had 48 individual physician visits. Forty-four percent of those patients died while in the hospital. The cost to Medicare for the last two years of each of these patients’ lives totaled almost $100,000. The national average was just over $60,000.

Certainly, Medicare beneficiaries in Los Angeles appear to have little grounds for complaining about stinginess of treatment. But what’s less clear is whether they really wanted such aggressive medical attention. Were they given other options? And were patients undergoing back surgery or TURP informed about the potential risks as well as the possible benefits of these treatments? When looking at statistics for end-of-life care, how many patients really want to spend their last days of life in the ICU, tethered to machines? How many really want to see an endless stream of physicians? Asking what it is that patients want is particularly critical when it comes to questions about medical decisions that have obvious tradeoffs – those tradeoffs may be weighed very differently by different patients.

Patients deserve choices they understand and treatment they really want. That means we need to do a better job of helping patients get the information they need, when they need it. It also means doctors and patients should be sharing important medical decisions. Patients should be able to get the treatment they need, and no less. But they should also get only the treatment they want, and no more.

Shannon Brownlee is acting director of the Health Policy Program at the New America Foundation and the author of Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer.

*Photo courtesy of Tammra McCauley.

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