An upcoming ballot initiative in California includes a provision that would require physicians to be drug-tested prior to practicing at any hospital, or after their involvement in an “adverse event.” This is packaged with other measures that appear political and punitive towards all physicians. But the drug-testing provision bears scrutiny because, while drug testing is widespread in American business, and required of nurses and many hospital and medical workers, private doctors are not routinely tested.

I’d like to tell you it isn’t a problem for doctors, but unfortunately, I’ve seen firsthand that there are physicians who practice while they are “under the influence.” As someone who oversaw doctors as chief of a hospital department charged with monitoring the quality of its members, the idea of a colleague practicing while impaired is terrifying. And while we physicians have a direct responsibility to protect patients, we often find it hard to speak up when we see something. The attitude is: If it isn’t my patient, it isn’t my problem.

Studies on the percentage of physicians who report to work impaired are scarce, but it seems to be very low, less than 1 percent. Still, the thought of any such physician is very troubling.

I personally made it my practice never to have a drink at lunch or in the evening when I was on call. You just never know what is going to happen, and you don’t want to have someone smell alcohol on your breath, even if you drank a small amount. Inasmuch as I was on call for most weekdays for 30 years, I never felt free to drink during my career.

Sadly, that was not always what I encountered from my fellow physicians.

I remember practicing as a young ER physician new to a small community hospital in California, and calling in a prominent surgeon to perform an emergency appendectomy. When he arrived, he strongly smelled of alcohol. I’m not sure if the smell colored my thinking, but I thought he was speaking more slowly than normal. It was the middle of the night, after all. There was no other choice for surgeon, and a delay exposed the patient to significant risk. The surgery went ahead, and the patient did fine. However, as I asked around, I discovered that this surgeon was known as a boozer, and frequently came into the hospital drunk. This still haunts me, and I left that hospital rather quickly.

That was my first experience with the difficulty of dealing with physicians who abuse mind-altering drugs. I didn’t make any sort of formal report on the surgeon; I would have felt intimidated. I passed the word along to colleagues, but that was all I did. Today, as a senior physician in the latter part of my career, I would hope that I’d do more.

That was a case when I recognized a problem. It can be hard to recognize that a colleague has a substance abuse problem even if you’re a trained observer of addicts. Among my professional pursuits, I was the director of a drug/alcohol program for a large medical group, and personally saw every patient who entered the program for several years. I thought I had a pretty good background in spotting the behavior of addicts.

In 1994, I hired an associate, Cindy, a graduate of a famous cancer center who was looking for temp work. She was young, attractive, and very smart. But I was surprised by her poor work habits, and my staff reported strange behavior. Drugs from the office started disappearing. It took too long for me to reach the clear conclusion that Cindy was abusing drugs. I just couldn’t believe it until it was undeniable. (Although she did deny it.) A year later she had her license revoked for drug use, unrelated to my experience with her.

It was very sobering to me that I was fooled by her for so long. Looking back, it was obvious, but at the time, my bias toward people with excellent training and good manners blinded me. I’m still embarrassed by it. But the bottom line was that even with close daily contact in the office, I didn’t recognize it, in spite of my professional experience with addicts.

Until a few years ago, the licensing board for physicians in California had a diversion program for those who were identified as having an abuse problem. It had a 75 percent long-term success rate. It allowed for anonymous reporting of suspected abuse, and it was increasingly used since the 1970s, when it started. However, the licensing board, in its wisdom, recently discontinued this program; in their view, the board’s primary mission was patient protection, not physician rehabilitation. Funding should not have been an issue: The program was paid for by physician licensing fees, not by taxpayers. Nothing has appeared to take its place, and so California is without a confidential reporting system for doctors.

I’ve spoken with a number of practicing physicians recently, and surprisingly, I hear a lot of support for mandatory testing. This support may have less to do with a desire to protect patients than with a feeling of impotence in dealing with colleagues who abuse drugs. Most physicians simply don’t know how to report a problem without potentially endangering their own careers.

Mandatory testing will cost a lot of money, and it is certainly intrusive to the daily practice of medicine. And I think just a small number of physicians would be identified by this process. However, here’s my diagnosis: patient safety concerns justify such testing for physicians, just as air safety concerns justify testing for pilots. And even with testing in place, doctors should not be excused from their obligation to report colleagues, and the government should provide a way to make such reports confidentially.

None of this should be done by a deeply flawed ballot initiative; instead, the legislature should craft a careful law that will work in practice.

The post When Your Doctor Is Drunk appeared first on Zócalo Public Square.

As a lifelong Californian, I’ve grown to love the mountains so much that I’ve done volunteer work in the forests of the Sierra for the past 15 years. And over that time, I’ve seen a dramatic shift in the condition of the forests. The problems are twofold: a lack of funding and a lack of personnel.

The problem is particularly acute in the Sequoia National Forest, most easily accessed from Bakersfield or Porterville. It has no forest rangers. Let me be very clear: I do not use the word “ranger” like others, who count anyone wearing a Forest Service uniform as a ranger. What I am talking about is the absence of the traditional “ranger-naturalist” who spends his or her time tromping the trails.

These are the rangers who interact with people in the backcountry, protect our resources on the ground, maintain the structures related to trails, check permits, and help people in trouble. Interacting with such folks remains a very fond memory of my youth, and it was part of what brings me back to the mountains.

Such people are gone now. Yes, you will find a few rangers who work in the information booths and offices, where the cars park, but there is no one away from the roads. This has translated into a slow but steady degradation of the forest, and the rise of destructive visitor behavior, such as graffiti on trees or the creation of fires when conditions are dangerous.

It’s not just the rangers who are gone. The professional trail maintainers have disappeared, too. Not so long ago, teams of such people maintained trails, using only “primitive” tools like shovels and handsaws. Skills with such tools are crucial because one rule of working in Forest Service wilderness is that any kind of engine or wheeled device is prohibited. Trails can’t be maintained with chainsaws or wheelbarrows.

Why are all these skilled people gone? It’s money, of course. The Forest Service budget to the Sierra forests has been cut on an almost an annual basis, with frontline workers bearing the brunt of the cuts.

Who fills the gap? Volunteers like me. Today, all the trail maintenance done in the Sequoia National Forest is performed by a half-dozen volunteer groups, members of which spend their own time and money to get special training, buy their own tools, drive up to the forest, and work hard for days or even weeks. For example, my group, the High Sierra Volunteer Trail Crew, has restored many trails that had been left to deteriorate.

Such work has to be done. Trails are artificial things. Water washes them out, trees fall on them, and rocks crash onto them. If these problems are not fixed, trails become impassible in just a few years.

Most trails require work every year, or they deteriorate. But such maintenance doesn’t always happen. Two years ago, I led a crew to repair a portion of the remote Pacific Crest Trail, which had gotten no attention in almost a decade. This is one of our great national scenic trails, yet it took my crew of 15 two hours to find it. It was so terribly overgrown that it took 30 days of work over a three-year span to clear just a few miles of trail.

This sort of thing is not just a labor of love but also a labor of public health. Trails need maintenance not only because people wish to travel in the wilderness, but also because poorly maintained trails erode the watershed, diminishing the quality of water in Central Valley cities.

Volunteers, of course, can do only a small part of this work. At least that has been the standard thinking. But now, there are only volunteers. With no one else chipping in, we don’t merely lose access to trails. We lose trails altogether.

The trails are organized into a system, and “system trails” are required, by law, to be maintained. But when trails can’t be maintained, as is the case now, the government complies with the law by “decommissioning” poorly maintained trails from the trail system. And decommissioned trails literally disappear from maps. One of the best mapmakers for the Sierra, Tom Harrison, tells me that Forest Service personnel regularly instruct him to remove trails from his maps. Eventually, no one knows the trail was ever there.

This trend represents the ongoing loss of national resources—our trails and the access they provide. And these losses seem to be happening without public awareness or debate. Yes, there are some people who believe that wilderness areas are better off without trails or the ability of people to access them; they want the land kept pure and believe that the harder it is to get into the forests, the better. They hold as their scripture the 1964 Federal Wilderness Act, which designates areas “where the earth and its community of life are untrammeled by man.”

I read the Wilderness Act differently, since it also speaks of wilderness lands being preserved “for the people,” as places where “man himself is a visitor.” Access to our public lands is a right of all Americans, and the huge system of public lands is something that distinguishes America from most of the world’s other countries. It also makes the Central Valley a special place to live. With the decline of forests and trails, we are losing a part of California—and part of our American selves.

The post Why California’s Trails Are Disappearing From Our Maps appeared first on Zócalo Public Square.

That’s fine in principle, but, in my experience, clear-cut threats are rare, while vague threats are common. And with the latter, it’s much less clear what a doctor should—or even can—do.

Consider the case of a mentally ill patient who might appear capable of violence but who doesn’t make an explicit threat. As a physician, I am in most cases legally prohibited from releasing information about this patient.

Many of us might want a mentally ill person who seems at heightened risk of violent behavior to be prevented from buying a gun, perhaps by having that person entered into a database of people who would be blocked from access to a gun, but currently, no such protection exists.

A few days after the recent shooting at Los Angeles International Airport of three people, including a TSA agent who died, I had the chance to speak with one of Southern California’s most experienced law enforcement officials, Long Beach Police Chief Jim McDonnell. He told me that a growing percentage of Americans, including 74 percent of National Rifle Association members, favor background checks for gun purchases. McDonnell said that in many of recent mass shootings with a single gunman—such as the cases of Jared Lee Loughner, James Holmes, and Adam Lanza—prior behavior on the part of the shooter suggested severe mental instability.

But when I asked Chief McDonnell about who people should call if they think that somebody who’s mentally ill is likely to be violent, his answer was, “I think that would be us.” In other words, police would show up to interview the person and decide if he or she could be detained. If no detention resulted, police would create an “incident card” in order to alert officers in case the person is at the center of any future incident. That’s helpful to policing, but it doesn’t have any effect in limiting the purchase of firearms.

Police are constrained because, in California, as in most states, there are very strict criteria for detaining a mentally ill person, embodied in section 5150 of the legal code. The person must be a danger to himself (or herself) or an immediate threat to someone else, or he must be unable to provide food, clothing, or shelter for himself. Making things harder is that the mentally ill exhibit great fluctuations in behavior. Sometimes they may appear to be dangerous, but at other times they may not, so a lot depends on when the authorities happen to encounter the person. Bizarre behavior does not qualify for the 5150 designation.

From what I’ve read, most of the recent mass shooters offered warning signs about their potential for violence, but none met the standards that would allow a policeman to take action. Even if I as a doctor were to report my misgivings about a person to the police, they would follow the exact same procedure as they would with a report from anyone else.

Earlier in my career, I spent several years working as an emergency specialist. In that capacity, I had the legal authority to certify a person for detention under section 5150. But I never used it for people who were just “potentially” violent, nor, as far as I could see, did my emergency department colleagues. In a hospital or emergency room, the actions and statements of a severely mentally disturbed person—short of credible, explicit threats—would not create the sort of red flag that those outside the medical or policing professions might think it would.

Perhaps, from now on, it should.

In the wake of so many shootings, healthcare providers should be thinking about how we might do more to prevent those who are severely mentally ill from obtaining firearms. To be sure, we must protect the rights of those who are mentally ill—most of whom are never violent—especially since they already suffer under many other burdens. But, still, the law will have to change. Otherwise it’s hard to see how we can place an effective barrier between the mentally disturbed and lethal weapons.

The post Mentally Ill, Yet Packing Heat appeared first on Zócalo Public Square.

But we may have to think of this problem differently. All three sources of L.A.’s water imports—the Delta in Northern California, the eastern Sierra, and the Colorado River—are maxed out and likely to decline with global warming. The risks of dependence are growing.

So how can we wean ourselves on distant water? Desalination gets attention, but the energy costs are prohibitive. Instead, we should be examining every bit of water that is already here in Southern California.

Much of that water is in pipes. Pipes leak. The leaks can be significant. Singapore reduced the amount of water that leaked from its pipes from 40 percent to 12 percent, effectively increasing their water supply by half. But in L.A., the Department of Water and Power is replacing aged leaking pipes much too slowly. At the current rate of replacement (about 23 miles per year of the 7,200 miles in the system), it would take 315 years to get through them all—and that’s with pipes that are only designed to last 100 years. We see three to four pipe breakages daily, and L.A. spends about $20 million a year fixing these breaks—and millions more in settlements for damages. To spend more money accelerating leak repair would save water and cash.

Rainwater capture is also promising. In just one large rainstorm, 10 billion gallons of runoff—one-twentieth of our yearly need—end up in the Pacific Ocean. The technology to capture large quantities is not quite developed, but people are working on it.

Finally, there is the kind of water that we throw away: wastewater. We should recycle it. And we already do. The city’s wastewater treatment facility in El Segundo is an engineering marvel that treats dirty water and sends it into the ocean. Every day, L.A. pours nearly 300 million gallons of highly treated water into the ocean. Yes, that bears repeating: We dump millions of gallons of highly treated water into the Pacific Ocean every day.

Why not keep that water here instead?

Right now, Orange County takes wastewater and treats it to ultra-pure levels, producing 70 million gallons a day of water that is superior to bottled water in quality (both by chemical analysis and blind taste tests). They have effectively duplicated the process of purification that takes place in nature, only much faster. I have drunk this water, and it tastes like any bottled water. The O.C. takes this water and dumps it onto the ground to be naturally filtered, so that it can replenish groundwater to supplement drinking supplies.

With wastewater recycling, L.A. could produce 100 billion gallons of bottle-quality water a year, or about half of our total water needs. And this is a supply that is not dependent upon a distant source or subject to interruption by economics, politics, or damage to the water transport system. There is a plan from LADWP to recycle this water on a small scale, but it does not take full advantage of the opportunity.

Of course, the cheapest water is the water you never use. Thanks to conservation, L.A. uses about the same amount of water as it did 40 years ago, despite massive population growth. But even having the lowest per-capita use of water use among large U.S. cities isn’t enough to save us. That’s why these other options are so important.

Between water recycling, rainwater harvesting, pipe repair, and conservation, we could come very close to eliminating our need for distant water altogether and achieving water independence, possibly forever.
Just as important, this “new” water would be relatively fixed in price, not subject to progressively steeper price hikes.

We need to take action now. The longer we wait, the more expensive it gets. The sooner we seek an end to L.A.’s dependence on foreign water, the faster that end will come.

The post Hey, World! Someday L.A. Won’t Need Your Water appeared first on Zócalo Public Square.

The post Ken Murray appeared first on Zócalo Public Square.

At a panel sponsored by the California HealthCare Foundation at MOCA Grand Avenue, experts in healthcare and end-of-life issues let a crowd in on the secrets that doctors–perhaps unknowingly–are keeping from patients and their families.

Dr. Ken Murray, author of “How Doctors Die,” traced Americans’ lack of familiarity with death to the 1950s, when the death industry was commercialized and parlors, where dead people were laid out for wakes, were renamed living rooms. He added that, while medicine has made incredible advances in the past six decades, the way people experience healthcare in television and movies offers a false sense of the power of intervention.

San Jose Mercury News reporter Lisa Krieger, the evening’s moderator and the author of a series of articles about the cost of dying in America today, asked the panelists what two or three things the audience needed to take away from the evening’s conversation.

Judy Citko, the executive director of the Coalition for Compassionate Care of California, said that we should start advance care planning now. If you are 18 or older, you should have an advance directive that includes treatment preferences and values, she said. At the very least, you should name a surrogate to speak for you. This can be tricky–since the people you love may react to your illness differently from you–but the job of the surrogate “is to stand in your shoes,” no matter how emotionally difficult that may be.

What questions, asked Krieger, should a surrogate, or other friends and family members who are making decisions for someone who’s very sick, be asking doctors?

Murray said that the best scenario is to have the patient’s long-term primary care physician–someone he or she trusts–on hand. He also said that it’s less helpful than we think to ask a doctor, “What would you do, or what would you do if it’s your mother?” Physicians are wary of imposing their own value system onto the patient. Instead, asking clear-cut questions and demanding answers is critical.

“If the doctor’s not the right person,” said Citko, “it can be helpful to bring in a social worker or a chaplain who can look at the bigger picture.” That’s because more than medical tests are at stake. Values are, too.

Shirley Otis-Green, a senior research specialist at City of Hope and a social worker with experience in palliative care, recommended requesting a family meeting in which family members meet with the doctor and a team that might include a social worker, psychologist, chaplain, and nurse. It’s a chance to make sure everyone is on the same page and ask difficult questions about the future.

Getting the entire family on one page can be a struggle, which is why, Citko said, the conversation should start long before a crisis and the attendant stress begins. Television can be a good conversation starter–watching someone die in a fictional setting–and so can the death of another family member. Otis-Green said that even the death of a pet could provide an opening for discussion.

What you can’t do in advance for yourself, said Citko, is leave a laundry list of procedures you do and don’t want. Most people suffer from complicated conditions that preclude anticipating the particular decisions that have to be made. It’s more important, she said, to think about what makes life worth living. “It doesn’t matter what your choices are,” she said. But “you should put them in writing so they can be honored.”

Still, added Murray, certain interventions can reliably be ruled out. “For terminal people, CPR is nuts,” he said.

While an advance directive is hypothetical, once you are ill, you have options specifically to decline certain treatments. A POLST (Physician Orders for Life Sustaining Treatment) form, said Citko, is based on your current condition. And it can be changed at any time, added Murray.

Money also plays a role in end-of-life decisions for both patients and doctors. What came to be called “death panels” were originally just a law intended to reimburse doctors for time spent talking with patients about advance-care planning, just as they are reimbursed for certain procedures that prolong patients’ lives but might not be in the patients’ best interest.

Murray believes that money is “a huge driver in the aggregate,” but argued that most doctors are not driven by money in individual situations.

In the question and answer session, audience members asked the panel for facts, figures, and more detail.

Other than CPR, what other common end-of-life procedures have a low probability of success? Murray mentioned ventilators, dialysis, and feeding tubes, all of which buy “miniscule amounts of time in most cases.” When we employ these procedures, said Murray, “we’re not prolonging life, we’re prolonging death.”

Watch full video here.
See more photos here.
Read expert opinions on how we can take control of our final days here.
Read Ken Murray’s “How Doctors Die” here and “Doctors Really Do Die Differently” here.

*Photos by Aaron Salcido.

The post Going Gentler Into That Good Night appeared first on Zócalo Public Square.

The response to this simple idea was overwhelming. I read thousands of comments people posted online regarding the end-of-life care of loved ones. They told of near-dead relatives being assaulted with toxic drugs and painful procedures for no good reason. I am haunted by one description of a patient who could neither talk nor move, begging with her eyes for it all to stop. Thankfully, such stories are slowly becoming less common, and, with an advance directive or POLST, you have considerably better chances of having a peaceful death, if that is what you want.

While the article rarely provoked hostility, it did, among some readers, prompt skepticism. I’d written the article in a personal, anecdotal style, so I rarely made use of numbers, studies, or charts. For example, Ezra Klein, writing in The Washington Post, wanted to see more evidence for my assertions. “Does anyone know of data on end-of-life spending for doctors?” he asked. “Or even on the percentage of medical professionals who have signed living wills?”

This essay is an attempt to address such questions. Perhaps it should be viewed as a set of endnotes to “How Doctors Die.” For every assertion of mine that was based on observation, I’ve looked for relevant scholarly evidence that might support or refute it. Here is what I found:

First, and most important, is the question of whether doctors, for the most part, die differently. One of the clearest indicators we have is a survey from Johns Hopkins University. It’s called the Johns Hopkins Precursors Study, and it’s based on the medical histories and decisions of students from the School of Medicine classes of 1948 through 1964 who volunteered to be part of the survey. According to the study, 65 percent of the doctors (or former medical students) had created an advance directive, i.e. a set of legal documents spelling out in advance what sort of end-of-life care they would like. Only about 20 percent of the public does this. When asked whether they would want cardiopulmonary resuscitation, or CPR, if they were in a chronic coma, about 90 percent of the Johns Hopkins doctors said no. Only about 25 percent of the public gives the same answer.

I also asserted in “How Doctors Die” that CPR is rarely as effective as people seem to think. What people have seen on television is at odds with happens in real life. A 1996 study published in The New England Journal of Medicine found that CPR as portrayed on television was successful in 75 percent of 60 cases and that 65 percent of the patients went home. In contrast, in a 2010 study of more than 95,000 cases of CPR in Japan, health professor Hideo Yasunaga and fellow researchers found that only 8 percent of patients survived for more than one month. Of these, only about 3 percent could lead a mostly normal life. A little more than 3 percent were in a vegetative state, and about 2 percent were alive but had a “poor” outcome.

My sense that there’s a yearning among ordinary patients to have more peaceful deaths has been echoed in the research of University of Wisconsin-Madison nursing professor Karen Kehl. In an article called “Moving Toward Peace: An Analysis of the Concept of a Good Death,” Kehl analyzed a collection of relevant articles and, based on their contents, ranked the attributes of an ideal death as follows: being in control, being comfortable, having a sense of closure, having one’s values affirmed, trusting in care providers, and recognizing impending death. Hospitals cannot help with most of these things. Unfortunately, most patients do not see their wishes fulfilled. A 1998 study published in the Journal of the American Geriatrics Society looked at Medicare patients and found that, while most said they preferred to die at home, most died in hospitals.

I discussed the tense, and often tragic, circumstances that surround many of the treatment decisions made in hospitals. Often, I noted, family members or medical staff effectively override the wishes of a dying patient. The studies I’ve found on this suggest that family plays a particularly big role in taking things in an unintended direction, especially when there’s nothing in writing. A 2003 study published in the Journal of Clinical Oncology found that most patients and families agree in theory that patients should make their own end-of-life decisions, but in practice about half of families override the stated preferences of patients. They have disagreements about the use of life-sustaining measures, and they lack written documents to resolve the matter. In contrast, a 2010 study in The New England Journal of Medicine found that people with advance directives usually receive the care they’ve chosen.

Every doctor has heard stories about people who have had miraculous recoveries, despite a doctor’s prediction. (Such stories are one reason doctors hate to make predictions.) But the sort of cases I’ve written about are those where all treatment has failed and the patient faces death soon. When applied to a patient in the last stages of a terminal decline, CPR is particularly ineffective. A 2010 study published in the journal Supportive Care In Cancer looked at terminal patients who wanted no CPR but got it anyway. Of the 69 patients studied, eight regained a pulse, but, 48 hours later, all were dead. Well-meaning CPR advocates talk in terms of “survival,” but all the term means is that the heart again beats on its own. In the above example, survival was 11 percent, but “survival” as often understood by the public–regaining a reasonable quality of life–was zero.

We don’t like to think about death. But that avoidance is one reason so many Americans fail to arrange an advance directive, even when they are severely ill. When patients of mine would come to my office accompanied by a family member, I often asked the patient how he or she wanted to die. I didn’t do it because the patient was on the brink of death, or even sick. I did it because I wanted the patient to think about the question and also to make sure that a loved one got to hear the answer. Unwanted futile measures, prolonged deaths, and hospital deaths remain commonplace in America and many other places. But they don’t have to be. It just requires our doctors and, no less, the rest of us to come to terms with the inevitable.

The post Doctors Really Do Die Differently appeared first on Zócalo Public Square.

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.

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So what’s a patient to do? You may not like the answer, but at least it’s simple: become your own doctor. I don’t mean you should go to medical school, of course. Nor do I mean you should panic–Google your itchy tongue (more on that later). But you do need to take on a new set of tasks.

Let’s look at the three things adult primary care doctors–also known as GPs (general practitioners), or general internists–do best. The first is to offer “episodic care,” meaning the sort of medical attention you get when you come down with something and head over to the doctor’s office. The second is to offer preventive care, helping you to head things off before they become a big problem. And the third is to monitor and treat continuing problems like diabetes or high blood pressure.

These are all essential services, and we’ll miss them when they’re gone. But here’s the best way to keep them–sort of–going.

First, when you get sick, use a walk-in clinic. These are usually called “urgent care centers,” and they’re often open 16 hours a day, perhaps located in a mall or pharmacy. So if your stomach is hurting like crazy, go consult your yellow pages or Google “urgent care” services in your city. In fact, do it before you eat that suspicious-looking soufflé and get too compromised to make good decisions. Check out the walk-in clinics nearby, write down the info, and put it on your refrigerator, so you have it ready. Here’s what you should not do: go to an emergency room with anything other than a true emergency, like a life-threatening problem. Misusing the ER is an incredible waste of time and money.

Second, start taking the lead in your own preventive care. The good news is that the resources are out there, and this wasn’t the case even as recently as five years ago. The best place to go is the website of the US Preventive Services Task Force. This is an entity that was created precisely to allow patients (and physicians) to have the most up-to-date and scientifically supported information on prevention. The recommendations come from non-governmental, non-biased experts, and there are strict rules in place intended to prevent personal biases–and especially monetary biases–from influencing the advice that’s offered.

If your research into preventive care reveals that you’re in need of some screening service, you can refer yourself directly to a facility that will take care of what you need. For example, go to a radiology center for a mammogram, go to a gastroenterologist for a colonoscopy, or go to a cardiologist for a treadmill. Then hit the urgent care center for blood tests, x-rays, immunizations, or other referrals. Keep a copy of all tests in your personal health record (for more information on this point, see my article on preventing medical miscommunications).

Third, if you’ve got chronic problems that require regular attention, start going to specialists for them. Studies show that primary care doctors do neither better nor worse than specialists when it comes to management of long-term problems such as diabetes, so it’s reasonable for you to seek long-term care with specialists, who will still be plentiful, rather than primary care doctors, who may be as rare as giant pandas.

In sum, being your own primary care provider, while not necessarily the most desirable burden to take on, can be a manageable task if you do a little planning and know where to go.

Now, a lot of these suggestions rely heavily on Internet use. That’s perfectly fine. But what’s not fine is frantically Googling your symptoms and coming up with half-cocked diagnoses. Before you know it, you’ll be suffering from smallpox, typhoid, and rabies. Instead, recognize that the worst-case scenario (my sore throat could be cancer!) is not even remotely likely, and stick to sites that offer reputable information. The websites of the American Academy of Family Physicians and the American College of Physicians are excellent and open to the public. Catch a free ride with them.

Meanwhile, current primary care providers can do a lot to help adjust to the new shortage. Every primary care physician should have a website, even if it just has updates on epidemics, downloadable forms, and basic information about the practice. This would save a lot of time in the office. Also, primary care doctors should eliminate hospital care from their regular work. Traditionally, doctors pay bedside visits to any patients of theirs who are hospitalized, in order to provide continuity in the patient’s care. But the emergence of hospital generalists called “hospitalists”–along with more enhanced communication systems–has largely replaced this need. While it’s nice for the patient in the hospital, it’s a huge and inefficient drain on a doctor’s time.

Primary care providers should also partner with urgent care centers and send all their same-day, sick patients there. This way, they stay on schedule, and their sick patients are seen right away, when it’s most convenient for the sick person.

Docs who do these things will have more patients, better informed patients, and restful nights.

Certainly, the shortage of family doctors is going to be a problem, but it also creates opportunities for both patients and physicians to improve existing healthcare outcomes, provided we take the initiative. As for finding a substitute for the deeper sense of reassurance that comes from spending real time with another human being devoted to your health–well, that we haven’t yet figured out.

Ken Murray, MD is Clinical Assistant Professor of Family Medicine at USC.

*Photo courtesy of daveparker.

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Welcome to the world of medical miscommunication. We hear a lot about health insurance and rocketing health costs and shortages of primary care physicians. But so many of the problems between patients and medical providers today just come from poor communication. When I look over patient surveys, the most common complaints I see are things like “My doctor doesn’t listen to what I’m telling him,” or “I told her about what happened, but she was too busy writing to listen to what I was saying.”

Remember, physicians can do only three things: carry out procedures, prescribe medications, and give advice. They have years of training in procedures and generally do those well. They also do pretty well in medication, even if some tend to go overboard. But giving advice is another story. Everyone struggles to communicate properly, but, in medicine, lack of time, jargon, fear, language, and even status make the problem unusually severe. You wouldn’t believe how many people are taking medications without any idea of why they’re taking them. You also wouldn’t believe how often people say yes to a procedure without any idea of what they’re saying yes to.

Is there anything that patients can do about it? Yes, and it’s not too hard. You’ll be getting much better medical care if you do five very simple things:

1. Cut through the jargon by asking questions

Every profession, from medicine to plumbing, has its own jargon. Doctors talk in technical terms all the time, but patients often are too shy to ask what they mean. Don’t be too shy! It’s your doctor’s job to help you understand.

At the same time, don’t trot out technical terms of your own. Patients often use medical terms incorrectly, and doctors take them at face value. It doesn’t do any good for you to tell your doctor you have meningitis when what you really mean is you have laryngitis.

Finally, make sure both of you are asking a lot of questions. If my colleague hadn’t asked the lady with diarrhea about her symptoms, he would’ve treated her for constipation, as I did. Asking for clarification is much easier than fixing a mistake.

2. Before you go in, write down your questions and ailments for the doctor–and bring an extra copy for you to write notes, for yourself.

Have you ever gone to the doctor and then come home realizing you forgot to bring up something that’s been wrong? The way to prevent that problem is to write down everything you want to discuss with your doctor before you go into the office.

Provide as much detail as possible. Include the history of your medical issue and what sort of other treatment you’ve sought for it. At the doctor’s office, give one copy to the receptionist as soon as you arrive, so that your doctor can review it even before your appointment begins. This will also go into your medical record. You won’t forget to ask the necessary questions–and, just as important, your clinician won’t forget to answer them. And you can use your own copy to write down the answers to your questions.

Writing stuff down in advance also helps prevent you from displays of stoic bravado once your doctor walks into the room. Recently, I accompanied a friend of mine to her orthopedist. She’d broken her foot not long ago and was still in a lot of pain. “How’s the foot?” the orthopedist asked. “Good,” she answered. My jaw dropped at this about-face. Not surprisingly, the orthopedist didn’t suggest any new approaches to her healing, and my friend remained in pain. If she’d recorded her pre-appointment thoughts in writing, she’d have had her own words in front of her to remind her of her real feelings–and her doctor would have had a copy of them, too.

3. Create your own health record–it’s easier than you think

We talk a lot about Electronic Health Record technology, which has a lot of promise, but for now most of us are a lot better off just creating our own health record. Simply get a paper or plastic folder and put your health documents in it.

Here are the documents you’ll need: your laboratory tests, biopsies, x-rays, imaging studies, and anything that has been identified as abnormal. (And don’t worry about asking your doctor for a copy of these records. It’s your body, and we are generally happy when someone takes an interest!) If you’ve been hospitalized, get a copy of your discharge summary, surgical report, and pathology reports. (The rest you can skip. Don’t waste your money.) Make sure someone close to you knows where you keep it.

When you go for a medical visit, take your health folder with with you. If your doctor asks about an old blood test or an x-ray, you’ll have the records right there. You won’t have to repeat lots of tests that you’ve already had. If your practitioner mentions some abnormal test result on your visit, ask for a copy while you are there, before you forget.

How much agony can this save? I once saw a patient who was a long-time smoker with a deep cough and an ominous shadow on his latest chest x-ray. I asked when he’d last had a chest x-ray. “Oh, 20 years ago, back at the VA,” he answered. What followed was a paper chase of many weeks, while the man and his family made arrangements for what they thought would be the final weeks of his life. When we finally were able to get the film, it revealed an identical mass from 20 years ago. It wasn’t cancer.

4. Get instructions in writing

Practitioners give verbal instructions to their patients about what to do with their medications or how to exercise, etc., but often these instructions don’t survive the trip to the street. They’re quickly forgotten or misremembered. They’re also misunderstood. One study found that three out of four ER patients fail to comprehend the instructions given to them by doctors. (I’ve seen this myself when people have come up with their own terrible ideas for what to apply to stitches–things like paint thinner, even perfume.) So try to get any instructions from the doctor in writing. Many clinicians have printed instructions sitting in their offices for the asking

5. Take notes

If your doctor doesn’t have printed instructions, write down your own instructions. Write down whatever else your doctor is saying, too. If you can’t do it in the examination room, do it immediately afterward in the waiting room. Now you won’t forget, and you won’t get it wrong. And take satisfaction in being one of the all-too-rare patients who take the lead in getting the right information to the right people. It’s the healthiest sort of communication you can have.

Ken Murray, MD is Clinical Assistant Professor of Family Medicine at USC.

*Photo courtesy of Chapendra.

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