This article is a co-publication of Zócalo Public Square and State of Mind, a partnership of Slate and Arizona State University focused on covering mental health.

In early 2020, weeks before Covid changed our lives, I sat uneasily with a dear medical school friend, listening to a panel of experts discuss burnout, moral injury, and wellness. The speakers focused on categorizing and describing these terms, recited research and data, and prescribed self-care strategies, including a healthy diet, exercise, yoga, and mindfulness. Many colleagues found these sessions helpful. I left feeling even more unwell.

These discussions began sprouting up at hospitals, including my own, well before the pandemic helped propel stress and burnout levels among health care workers to an all-time high. Health care worker burnout has been tied to physician and nurse suicides, depression, and medical error. It impacts cognitive function, patient safety, and quality of care.

My testy relationship with burnout and wellness presentations begins with their dominant focus on data. I don’t need research to explain what I’m feeling. Over three decades, I’ve navigated escalating obstacles to care for patients as an emergency physician in a broken health care system. The past three years, the crushing constraints eroded my integrity as a healer. I knew patients deserved better and could feel their trust slipping away.

I often feel numbed by it all. I want to feel more, care more, and recognize myself again. I want to work with the uncertainty, and understand that burnout can never be fully defined or mastered, only honored and engaged with.

Psychology researchers define burnout as experiencing depersonalization, emotional exhaustion, and a loss of accomplishment or efficacy. Wellness presentations are supposed to address such symptoms. But I’ve found that when interventions oversimplify and universalize complicated feelings under the banner of burnout, they compound my sense of losing control, depersonalizing an experience already marred by depersonalization.

The problem isn’t the message but the framing. Why do hospitals and physicians approach burnout as a problem, and not a mystery?

The French philosopher Gabriel Marcel distinguishes a problem from a mystery in a way that I find helpful. A problem, he writes, is external to us. It’s objective and universal, and its solution is available to everybody. Take a faulty electrical circuit that won’t light a bulb. We troubleshoot the power source, the wiring, even the bulb to figure out how to fix it. The repair process is rooted in a shared understanding of principles, functions, technique, and scientific knowledge.

A mystery, Marcel explains, is “a problem that encroaches on its own data.” We can’t study a mystery objectively because the problem itself is rooted in the person. We can’t lean on a generalizable technique because the individual is involved in the quest. With mysteries, we can’t substitute one person for another, one experience with another, without altering the question itself. The person asking the question matters.

Through a prism of mystery, we thwart the impulse to universalize, to define, to break a problem into its parts and analyze with detachment, which are standard techniques we bring to our study of problems in medicine. Despite the wealth of research on health care burnout, I fear it’s become shorthand for a range of complicated individual experiences that are hard to put into words, let alone define, measure, or master.

The conversation changes when the focus shifts from the occupational syndrome of burnout to the individual, from ready answers to questions about the experience itself.

What if wellness experts spared overworked physicians from their next PowerPoint presentation and instead asked them to come up with their own language to capture their experiences and feelings? Doing so would force us to drill inward, which can be difficult. But the struggle to articulate our stories is the struggle to wrestle control over our experiences.

If I had been asked, in early 2020, what nagged at me, I would have pointed to pointless medical bureaucracy and its torturer’s apprentice, the electronic health record. I would have bemoaned the way the system leans on emergency rooms to solve mental health and substance use problems that community leaders and other institutions don’t or can’t handle.

If you asked me the same question now, I’d say I was stumbling into the post-pandemic normal, concussed by all I’ve absorbed and not fully processed: needless death and suffering; patient anger, insults, and violence against ER staff; degradation of standards in respone to constraints and resource limitations; staff exoduses.

Talking about burnout is easier than talking about being burned out. Physicians and nurses fear judgment and stigma—being perceived as insufficiently smart, mentally tough, or resilient.  To admit my feelings out loud instead of hiding vulnerability—and hear in return how colleagues struggled, too—would acknowledge our range of experiences in all their messiness, and blueprint possible bridges from isolation to community.

Building a culture that supports well-being is critical, as U.S. Surgeon General Vivek Murthy has noted in his recent call to get to the roots of the health care burnout crisis. System change begins at the level of human interaction. The pressures and waves of disturbances that make a life—different personalities, relationships, previous experiences, and institutions—are complicated and individual. Fostering authentic conversation is a good place to start.

To see ourselves differently, we must slow down and change our angles of understanding, or “make strange,” our previous ways of knowing. This idea of defamiliarization, made famous in a 1917 essay by the Russian literary critic Viktor Shklovsky, builds on our tendency not to notice things we encounter frequently. Our perception becomes habituated. Defamiliarization disturbs all that and forces us to see experiences and objects anew.

Writing and the arts function as a medium for defamiliarization. Critics often perceive humanities and arts-based medical education—from collaborations between museums and medical schools to reflective writing courses—as soft, nice but extra, or as a pill for humanism. But the arts provide rigorous critical thinking skills—they foster perspective shifting, remind us to consider cultural, historical, and social forces, and prepare clinicians for situations that push them outside their comfort zones. In 2020, the Association of American Medical Colleges issued a landmark report recognizing the need to integrate humanities and arts into medical education through writing, visual arts, dance, improvisation, museum-based experiences, and more.

Wellness or burnout initiatives should prioritize exploration and value curiosity and uncertainty. Interventions should regard easy answers with healthy skepticism. An authentic process, even without a “cure,” is an end unto itself. In the “third space” between art and the science of medicine, we can encourage vulnerability and the emergence of different discussions and insights. I find museums, with their quiet rooms and curated art objects, provide psychologically safe spaces for nourishing destabilization. In my experience, dialogue with artists and arts experts seeds different types of questions than typical medical wellness programs. It has forced me to engage with alternative ways of looking at, and appreciating, daily experiences.

The jury is out on the role of humanities and the arts for burnout. The effects of such programs are difficult to measure. Arts-based reflection doesn’t promise answers, or lend itself to data sets. But it might allow each of us room for contemplation, a chance to recover that which is mysterious in our lives, a moment to recognize who we’ve become, what we’ve lost, and what is still within our grasp.

Let’s not forget that we’re talking about human hearts in peril, searching for that ferry from burnout to better. I can’t say what the journey looks like—only that it requires new maps.

The post Are Hospital Wellness Initiatives Making Doctor Burnout Worse? appeared first on Zócalo Public Square.

The belly pain is so bad that Mrs. Alves*, a woman in her 40s, is worming uncomfortably on the ER stretcher. “I need an answer,” she says. I promise her that pain medicine is on the way. What I can’t promise her—despite countless tests and specialists’ opinions already on record—is the definitive answer. The diagnosis, the root cause of her symptoms, proves elusive. But her distress is real. And when there’s distress, there’s a story.

To be an emergency physician for nearly 30 years is be humbled again and again by the mysteries of the body and the humans inhabiting them. Mrs. Alves is one of an endless number of patients I’ve seen with the urgent need not just for a diagnosis or treatment of some kind, but to be heard, to have an ear turn its clinical attention to their story.

Stories are not just listened to, they’re constructed, and both tellers and listeners are part of the process. And yet, discussions around doctor/patient communication ignore this fundamental truth.

Healthcare stresses evidence-based practice, clinical decision-making informed by well-designed research studies. However, it’s less interested in scholarship that complicates this paradigm. Knowledge is tied to belief, and the greater our confidence in our beliefs, the more likely we’ll consider it knowledge. Our confidence in our beliefs, experts say, depends less on the quality of the evidence than the coherence of the story constructed in our minds.

The best evidence-informed decisions are useless, if not dangerous, unless we first get the patient’s story right.

In healthcare professionals’ training, a patient’s story is generally shorthand for a medical history—current and past symptoms, medical and surgical problems, and social history. But a medical history isn’t the same as the patient’s story. A detailed description of symptoms can still miss the deep troubles and unspoken needs plaguing a particular person at a specific moment in their life.

I was taught that my job as a doctor was to find the patient’s story—this solid, complete entity—and bring it back by listening diligently, paying attention, and being present. Important practices, but they ignore a central challenge of working with stories—they’re less like polished jewels and more like first drafts.

Patient stories, like all stories, are created out of fragments of information. Deciding which details to include and what to leave out is daunting for writers blessed with quiet and time to revise. Imagine an ER patient in that pressured moment, surrounded by loud noises and strangers, expected to describe experiences that can be complicated, frightening, and embarrassing—and not knowing which details are relevant to their problem and which aren’t.

When we’re listening in this moment and others, doctors are not just receiving information. We’re continuously sorting, prioritizing, and interpreting fragments to create an orderly and coherent narrative. We’re making micro-decisions about which details might be relevant to the problem and discounting others. And our story-making brains don’t need much to construct a believable reality.

This tendency is demonstrated in a well-known 1944 social psychology study. Researchers Fritz Heider and Marianne Simmel showed subjects a simple animated movie where a large triangle, a small triangle, and a circle moved in and out of an opening and closing rectangle. Then, they asked research subjects to describe what happened. Respondents took these inanimate shapes and described drama, bullying, jealousy, and romance. Only one person told what their eyes observed—geometric objects moving about a screen.

When I played this film for my students, they created confident, specific, and even passionate narratives: a lesbian love story with a disapproving father, a terrified mother and child escaping from an abuser, children’s playground dynamics.

They laughed uneasily, as if catching their mischievous minds in the act. They also learned how subjectivity, assumptions, and their own personal histories contribute to the construction of an apparent objective experience. I illustrated the point with my own narrative mistakes, like the one I made with an uncooperative man with severe back pain and a history of opioid use disorder. I suspected drug-seeking behavior. I thought my words respectful and unbiased, but we began to knock heads. Then, he told me about how he was in recovery, and desperate for other types of treatment to control his pain. He was finally back at work and didn’t want to lose this job. He went on to explain how he could tell from the tone my colleagues and I used that we came into the room with a story fixed in our heads. And to my shame, he was right.

For all the attention given to medical harm in hospitals, or instances where patients felt their needs went unheard by clinicians, doctors rarely examine these situations as narrative missteps.

Narrative is defined in various ways, including a report of connected events and chronology with meaning. A more expansive interpretation draws on the word itself, which is derived from the Latin narrare, which means “to tell” or “to know,” and invites us also to consider narrative’s capacity for knowledge production. Sometimes, the narrative the patient wants us to hear is what’s unsaid. But physicians are poor at picking up on these cues.

Take the older patient who presents to the ER after a fall. The physician asks about the circumstances, including why he fell, his history with falls, and possible injuries. She learns he’s not eating or drinking. He’s not getting around like he used to. He lives alone. She could stop there and move on to the physical exam. Or she could keep him talking.

Studies show that patients may cue their negative emotions or their real concerns indirectly. In this case, the man’s family lives out of state, his wife recently died, he’s been grieving, and he won’t leave the apartment that holds a lifetime of memories. He’s not eating because getting up and down the two flights of stairs is not as easy as it once was. This proud man wearing a Navy cap won’t offer up these details, but his vulnerability unspools once he’s asked.

Patients want their physicians to ask questions. Unfortunately, health providers often respond by focusing on logistical or biomedical issues. By neglecting emotional communication, we miss opportunities to express empathy.

Such behavior is often attributed to time constraints, but research shows that when we pick up on patients’ often quiet or even silent cries for help about psychological or social issues, time is often saved.

When we work with stories and recognize the different ways they are constructed and communicated, we begin to appreciate not only their power but their fragility. For patients to tell their stories, they must first overcome the vulnerability that results from admitting fears and insecurities, new frailties, and limitations. And as physicians reaching branch points in the conversation, we must be sensitive to the presence of other directions the narrative might go, and how and why we might be motivated to steer it down a particular path. Is this path safer, or clearly marked, leading to an identifiable destination?

We must be willing to interrogate our story-building process as rigorously as our research methods. What stories are we listening for, what assumptions or beliefs are we bringing into the story, and how are these value judgments influencing the stories we hear?

As I listen to Mrs. Alves crying for an answer, my first instinct is to order more labs and diagnostic imaging. Instead, I take a seat, and ask her not only to describe her pain but the experience of being in pain, and what distressed her enough to come to the ER. She tells me about the specialists who won’t call her back or dismiss her symptoms when tests come back normal. Her doctor is hard to reach. Besides, he thinks it’s all in her head. What she wants from them is what she desires from me: someone willing to listen for a few minutes, who will be curious about the pain, but more importantly, appreciate how it’s disrupted her life. Quality and compassionate patient care are only possible when the physician and patient work from the same story.

*The names in this piece have been changed.

The post The Stories Doctors Tell appeared first on Zócalo Public Square.

Our friend, a physician, had just witnessed the death of a 27-year-old man with no chronic conditions. In his hospital, doctors were already making decisions about who to put on ventilators. “It’s a mess and there’s no help,” he told us. The young residents—doctors in training—were completely disillusioned; one of them told him, “When this is over, I don’t want to do this anymore, if this is what our health care system has come to.”

We should all be afraid about that reaction to COVID-19. If this pandemic can be compared to a war, we have sent our soldiers—our medical professionals—to the front lines without the protection and protocols they need to survive. Physicians, nurses, and other hospital workers are overwhelmed by endless streams of patients, the extra-long hours, and the deaths they see all around them. Scared and confused, they fight on. We should expect that when their duty is done, some of our best and brightest will decide never to return to the battlefield again.

In this respect, this pandemic is an extension of the ordinary. The United States routinely neglects the needs of one of its most vital workforces. If COVID-19 has any silver linings, the most important one will be its exposure of the fault lines in American healthcare, including the fact that even before the epidemic hit, healthcare professionals were suffering from toxic levels of burnout that hampers their ability to care about their patients.

More broadly, this epidemic shows that many aspects of the way we speak and think about healthcare, and the way we provide it, need to be reconceived and redesigned. To do that, we need to listen to doctors, nurses, and other healthcare professionals.

Despite the health risks of treating COVID-19 patients and the lack of masks and basic protection in many hospitals, healthcare professionals are not running from the challenge. Instead, they are building their own masks out of office supplies, coming out of retirement to offer aid, and isolating themselves in garages and trailers to protect their families.

Such commitment is particularly impressive when you consider that even before COVID-19, a significant proportion of them were unhappy in their jobs. According to research from the National Academy of Medicine, between 35 percent and 54 percent of U.S. nurses and physicians feel substantial symptoms of burnout, including exhaustion, depression, and emotional numbness. For medical students and residents, the prevalence of burnout ranges from 45 to 60 percent.

Our caregivers are not just tired or stressed—they are experiencing “moral injury.” The term moral injury was coined in 2009 to describe how soldiers’ mental health suffered from having to act against their own moral compass in times of war. Dr. Simon G. Talbot and Dr. Wendy Dean applied this term to the healthcare setting to describe the “suffering, anguish, and loss” clinicians feel when they cannot deliver the care patients need in our profit-based healthcare system.

In our profit-based healthcare industry, billing is king, and clinicians bear the brunt of the busy work that’s required. According to an annual survey conducted by Medscape, an online medical news outlet, the most common contributor to moral injury is the absurd number of bureaucratic tasks healthcare workers now do. For example, a 2016 study found that physicians in four specialties spend about half of their work day filling out electronic medical records and paperwork. Family physicians spend another 1 to 2 hours at home after work doing coding and billing in the electronic medical record.

Another casualty of profit-driven healthcare is the time doctors get to spend with patients. More patients per day means more billing opportunities, and many clinicians are pressured to fit as many patients in their schedule as possible. The “15-minute visit” in primary care has become routine. Many physicians barely have time to listen to patients’ concerns before sending them for one test or another. This diminished time with patients gives doctors and nurses the feeling that they are mere cogs in a computerized system that cares little about people and their health problems.

This is not what most practitioners signed up for, and the mismatch between the ideals of medicine and the reality takes a high toll. Physicians in the U.S. have the highest suicide rate of any profession. That statistic may reflect the fact that physicians are stigmatized and sometimes punished for seeking mental healthcare.

Of course, the COVID-19 pandemic has reinforced the sense of purpose driving many medical professionals. But as they’re putting themselves in danger, and their mental health is suffering as they watch patients and even colleagues die. For many, including our friend in Queens and his colleagues, the crisis has already inflicted a devastating emotional impact.

In order to retain health professionals after this epidemic, we must do more than recognize their sacrifices, or address their current anger. We must answer their long-held concerns—and involve them in charting new policies and ways of keeping them healthy enough to tend the sick. Call it the GI Bill for Healthcare Professionals, if you will.

Some of these new policies should be financial. Nursing and medical students often leave school with thousands of dollars in debt, and the mental stress that accompanies it. Educational debt also adds pressure for doctors to choose a high-paying specialty rather than primary care and geriatrics, where the need for a larger workforce is most urgent. Steps can be taken to address that: Erase all health professionals’ school debt to help those already in the field. In addition, medical, nursing, and physician’s assistant training should be free for all low-income students, to encourage more people from disadvantaged neighborhoods and regions to pursue these necessary careers.

We also need to ease some of the burdens of daily work life. Electronic health records, as currently configured, are primarily tools for maximizing billing. Beyond the time required to fill them out, they create all kinds of headaches for doctors and nurses, who find them incredibly frustrating to use. These record systems need to be redesigned into one single, easy-to-use platform, with the primary purpose of improving care. A committee of healthcare workers should be the principal advisors in this endeavor.

We also need to adjust regulations to make it easier to deliver care to patients. In this state of emergency, the federal government has eased regulatory requirements to allow increased flexibility in where and how patients are treated. For example, Medicare is now paying clinicians for a wide range of telehealth services. We have heard from frontline clinicians that the reprieve from many regulatory and administrative burdens has reminded them of how much better it feels to devote time to caring for patients, rather than navigating paperwork and rules.

One primary care doctor told us that before COVID, she would have to see patients in person to determine that they did not need to see her for in-person visits. Now, she is encouraged to care for patients virtually whenever possible, without an unnecessary in-person visit beforehand. Common-sense policy changes like these should be made permanent if possible, with recommendations from healthcare workers helping to drive decisions.

Unfortunately, it isn’t enough to make health jobs easier and more patient-focused. After this pandemic, doctors, nurses, and other healthcare workers will need to recover from what they’ve recently experienced. Hospitals should expand access to counselors and other mental health services we need, and teaching hospitals must do the same for trainees. Health professional schools should follow the example of Weill Cornell Medicine in offering free mental health counseling for all students. Mental health services should be accompanied by safe and confidential screening services for depression, PTSD, and other mental health issues, to reduce barriers to access.

Finally, in the wake of COVID-19, the U.S. public health response to pandemics will have to be re-evaluated and overhauled. One priority must be to make sure healthcare workers are never forced to beg for masks and other basic protections again. To that end, we should establish a Clinician’s Affairs agency within the Department of Health and Human Services with representation from nurses and doctors. By putting clinician representation at HHS, and also at the Department of Homeland Security, it would position healthcare professionals to give direct input on national health and security policies.

For years, Americans have stood by as the healthcare system pushes our doctors and nurses to the breaking point. Now, our need for them is as great as it’s ever been, and we are pushing them further. World War II veterans got the GI Bill. Clinicians today deserve the same assurances. We need a Healthcare Professionals Bill that eases their educational debt and also includes them in redesigning multiple aspects of our broken system.

The post What Do We Owe Doctors and Nurses? appeared first on Zócalo Public Square.

That was one of the insights offered at the outset of Wednesday night’s well-attended Zócalo/Arizona State University event at Phoenix’s Desert Botanical Garden. The panel discussion featured Dr. Denis A. Cortese, emeritus president and CEO of the Mayo Clinic; Sir Malcolm Grant, chairman of NHS England; and ASU President Michael Crow, who moderated the evening.

In the case of Britain, Grant explained, the NHS was created by the Labor government in 1948 “in place of fear,” with a commitment to provide free medical service to all British residents, paid for by general tax revenues. Chuckling, Grant noted that the government initially thought the cost of NHS would decline within a few years, “after it had fixed most people’s problems.” Nowadays, NHS covers 60 million people and consumes 8 percent of British GDP.

In America, said Cortese, who now directs ASU’s Health Care Delivery and Policy Program, the same postwar period saw the Truman administration impose price and wage controls to stabilize an overheated economy and counter inflationary pressures. “But the government did allow organizations to compete for workers and talent by offering them health insurance and other benefits,” Cortese said. Thus the curious linkage that persists to this day between the workplace and health care.

Back in the late 1940s, Americans on average only lived two or three years after their retirement, but as lifespans increased, a new system was required to care for millions of Americans beyond the workplace. Medicare was born in 1966, with substantial bipartisan backing. It too proved a far costlier program than anyone had anticipated.

In framing the night’s discussion, Crow pointed out that of all major industrial nations, the United States spends the most per capita on health care (amounting to some 16 percent of the economy) and obtains relatively poor health outcomes (looking at life expectancy rates and other benchmarks) for that investment.

This was the second striking commonality to emerge in the comparative discussion of health systems. On both sides of the Atlantic there is a growing dissatisfaction that society isn’t getting its money’s worth for all its health care spending. And that is especially alarming because, as it is now, Grant said, “no health care system in the world is financially viable as currently designed.” He described the NHS, often beset by political meddling, scarcity, and labor unrest, as being on “creaky” footing.

“The NHS is the closest we British come to a national religion,” Sir Grant said, “which is good when it comes to ensuring it has enough resources, but not so good when it comes to reforming it.” (Though he and Crow both mentioned that in an analysis of 10 developed countries, the Commonwealth Fund still found the NHS to be the most impressive health care system.)

Both speakers took turns throughout the evening being slightly wistful about each other’s systems, with the American wanting more of Britain’s coherent strategy, and the British desiring more American-style “entrepreneurial spirit” in Britain.

“For all its flaws, at least the U.K. has a vision,” Cortese said. “We still haven’t developed a national plan and strategy” for our future health care needs.

While Grant pointed out that in some ways the British system is more fragmented than people expect, the United States in some ways has more of a national program than is often acknowledged, when you look at Medicare, Medicaid, and the health plan available to federal employees.

Crow described challenges that both systems face as the consequences of “well-intentioned design flaws.” He reminded the audience that it is hard to generalize about outcomes in American health care, because these are correlated to income levels, a reflection of broader societal inequalities. Geographic ones, too, Cortese added, by pointing out that the top third of U.S. states have health care outcomes that are as good as those in any nation, but our lowest-ranking states resemble Third World nations in their health profiles.

And for all their differences, in both Britain and America Cortese and Grant agreed that the health delivery systems’ incentives have been perverted by paying providers for services, instead of outcomes. As Cortese put it, the United States has developed “a totally rational delivery system predicated on the idea that if you’re sick, we make money.”

The question, both experts agreed, should be how do we reward people for keeping patients out of hospitals, not in them.

As they tackle that challenge, Cortese and Grant described both the English and American systems converging toward each other in several ways, with the NHS in Britain pushing some spending decisions back down to the regional level, and America seeking to get more of its patients’ data digitized and connected.

When Crow mentioned that many of the leading causes of death in this country are behaviors as much as diseases, both experts agreed that a greater emphasis need to be placed on preventive medicine, and looking at root causes of poor health behaviors.

“To take care of a population, you need to know who they are,” Grant said, and then adapt your care. The idea should be to standardize outcomes, not delivery tactics.

In a question-and-answer session that followed the discussion, a young cardiologist in the audience asked about the future for doctors who care deeply about patients and want to spend time with them and not be treated like factory workers on an assembly line. Cortese said that in communities like the Twin Cities in Minnesota and Seattle, physicians are becoming more accountable and exerting more control over health care by creating their own insurance systems.

And both experts agreed that in both countries, providers need to break away from the traditional mindset that hospitals, as opposed to preventive clinical centers and other health-care delivery platforms, are the center of the health care universe.

As Grant said, after asking the audience if anyone wants to check into one tomorrow: “Hospitals should be looked upon as a symbol of our health system’s failure.”

And that would be true whether the hospital is run by a national health service or a private company.

The post National Oversight or Not, All Health Care, Like All Politics, Is Local appeared first on Zócalo Public Square.

Not everyone agreed, of course. Government-sponsored health insurance would encourage freeloading, or at least result in a ton of bureaucracy, opponents contended. Why offer more power to the federal or state governments when most insurance could be handled privately?

Today, the debate rages on. While the 111th Congress passed the Affordable Care Act, which, among many changes, mandates that all Americans possess health insurance and requires private insurance companies to offer certain kinds of coverage, subsequent Congresses have voted to repeal the act. Even as Donald Trump has hinted at the value of national health care coverage, a spokesman has tried to clarify that he’s against “socialized medicine.” No one thinks that America’s health care system is perfect, but what really is the best way to for a country to treat its sick and pay for this treatment? Should nations try to partner with neighbors to create international systems, perhaps continent-wide, to ensure equal coverage for all? Or, conversely, should care be focused at the most local level, to be most nimble and creative?

In advance of a Zócalo/Arizona State University event on the best ways for countries to approach health care, we asked a variety of health-policy experts: Should health care systems be national? What are the advantages and disadvantages?

The post Is Universal Health Care an Impossible Fantasy? appeared first on Zócalo Public Square.

She lived a full life, but illness is getting the best of her. Could be days, could be weeks, the doctors say—unless, that is, she tries one particular treatment. It’d involve some suffering on her part—needles, tubes, doctors checking up on her and all that—but, if it works, it’d buy her another few months.

The family’s divided: Her daughter says fight the illness, give her everything medicine’s got. Her son doesn’t want her to endure any more pain.

So, which is the right option? When is it time to prepare for death instead of delaying the inevitable? And did anyone ever bother to ask grandma what she wants?

John Fairhall, the editor-in-chief of Kaiser Health News, presented this scenario last night to an overflow crowd at a Zócalo/UCLA event, “Does Medicine Know How to Approach Death?” The scenario is a common one in hospitals, he said. In an age of rapid technological innovation and tremendous advances in medical treatment, medicine is capable of extending life longer than ever before. But with this new power come new ethical challenges. Moderating a discussion at the Museum of Contemporary Art, Los Angeles, Fairhall pressed four panelists to tackle the hard question of who decides when and how we should die. They agreed the answer first and foremost is a matter of respect—and planning.

“I think the real meaning of treatment is getting to know a patient,” said Susan Stone, a doctor in the Annadel Medical Group of the health care network St. Joseph Health. “We have to understand who this person is. What do they do in their life? What are the things important to them now?”

Sure, we live longer than we used to, Dr. Stone added, but the quality of that longer life needs to be taken into account. “Just because something is there doesn’t mean we have to use it,” she said.

Katherine Brown-Saltzman, a registered nurse who directs the UCLA Health System Ethics Center, agreed with this principle, yet added that things get complicated. While some families make an effort, along with their doctors and other health care providers, to plan for the end of life, the stress of actually confronting death has a tendency to make us throw plans out the window. Families still end up disagreeing, and doctors worry about upsetting people and provide false hope for treatment, when they should be advising patients to look into hospice, the form of end-of-life care that focuses on reducing suffering rather than extending living.

“Until very recently, we as a society haven’t had good conversations about what our values are,” Brown-Saltzman said. “There’s a lot of fear, often the need for control, and not enough listening happening. What does a good death even look like? ‘What do I want this to look like?’ It’s very difficult to sort that out when all these options are in front of you, and medicine is coming from the perspective of ‘let’s look for a cure.’”

The solution, the panelists agreed, is not just a more individual approach to patients, but a more holistic one as well—addressing not only physical needs, but psychological ones; alleviating not only pain, but suffering. This approach goes beyond the purview of doctors to encompass nurses, social workers, and chaplains, among others.

“The existential pain at the end of life can be so great, from a lifetime of shoving things under the rug,” said the Rev. Lori Koutouratsas, palliative care chaplain at the UCLA Medical Center in Santa Monica. “I have conversations with physicians all the time who are like, ‘I don’t know what to do with this patient.’ … For me, being a pastor is an opportunity to connect with people intimately, and to help them in whatever human condition they’re going through—to help them adapt and make meaning out of what they’re experiencing.”

But the approach to meeting patients’ needs isn’t without its controversies. Exactly how far should medicine go?

California State Senator Bill Monning talked about losing multiple friends to cancer, which was part of the inspiration for the End of Life Option Act, a law he co-authored that legalizes the provision of a lethal drug to consenting, mentally stable terminal patients who have less than six months to live. (Monning and others prefer the term “death with dignity,” on the grounds that “suicide” technically is an irrational act.)

“We live in a culture in denial of death,” he said. “[The End of Life Option Act] would underscore the efforts of wanting to create compassionate choices for a situation.”

Despite disagreements over the law’s ethics, the panelists agreed that, on principle, at least, the more options available to patients, the better. In a question and answer session with the audience, they talked about the importance of overcoming cultural and economic barriers so that services like palliative and hospice care are available to everyone, not just those who can afford them or who already know they’re viable routes.

That means educating both doctors and patients about when to look beyond mere treatment. It also means more carefully allocating funds to a variety of ways to deal with dying, rather than throwing as much money as possible at keeping people alive for as long as possible.

Brown-Saltzman told a story from her hospital about an estranged son who came to see his dying father, who could no longer speak. The son didn’t know what to do, so Brown-Saltzman gave him a razor and suggested he shave him. In doing so, the son remembered all the joyful moments he had with his father earlier in life (including his father teaching him how to shave), and forgave the father for whatever had caused their split.

“That’s what I’m talking about,” Brown-Saltzman said. “That’s the kind of healing I want.”

The post In Medicine, Dying Doesn’t Have to Be a Struggle appeared first on Zócalo Public Square.

This is a scene that could play out only in our present age of medicine. Advances in medical care have allowed us to extend life beyond what was previously possible. But what life becomes in these cases isn’t always pretty: The price for a few more days or months may be intense suffering. “In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality,” Gawande writes. The result, he says, is “a new difficulty for mankind: how to die.”

Who decides how to die? When is it right to stave off death with all the technology available, and when is it right to accept the end—through hospice care, which focuses on making the end of life as comfortable as possible, or even, at a controversial extreme, through physician-assisted suicide? In advance of a January 20 Zócalo/UCLA event, “Does Medicine Know How to Approach Death?”, we asked end-of-life experts: What can medicine do to better cope with the ethical challenges of modern end-of-life care?

The post Has Modern Medicine Made Dying Harder Than Ever? appeared first on Zócalo Public Square.

I remember so well the morning our medical examiner came into my office to tell me about the autopsy. He had just completed his post-mortem examination on a woman I had seen the previous day. She was a long-time patient of mine; I knew her well. She had come to me for “just another migraine”—her usual problem. Less than 24 hours later, she had died from bleeding into her brain.

This was among the most terrible events in my life, causing memories of that event to be very deeply etched. Even after 25 years, I can still describe her in fine detail, down to the dress she was wearing and her hairdo. No other patient remains so clear to me.

Stories like this aren’t rare. As a physician who studies patient safety and medical events gone wrong, I hear from strangers all over the world who share these deeply personal experiences with me. While the emergency department, operating rooms, and intensive care units probably face death the most, if my inbox is any indication, clinicians in all medical specialties have dark and painful encounters. The effects can linger for decades, lurking in the background of even successful and prestigious careers.

I’m an anesthesiologist, so I care for patients during some of the most high-stakes moments of their lives—birth, surgery, critical illness. I’ve seen injuries and diseases so severe that the best efforts of the best experts, even when perfectly executed, cannot fix them. I’ve also seen the most capable and caring healthcare professionals make mistakes—and I’m sure I’ve made my share. Witnessing death is hard on most people, but there is a perception that physicians are supposed to be immune. The psychological aftermath of painful cases is rarely discussed among doctors—at least, not publically. And that is putting both doctors and patients at risk.

More than likely, the death of the woman mentioned above could not have been prevented. Her diagnosis was extremely unlikely, especially considering headaches were “her usual.” Yet the doctor has been tormented for 25 years by feelings of responsibility and failure—that if somehow he’d only known, she’d be alive today.

This doctor is an example of a “second victim”—a term that historically has referred to a patient’s family and friends who experience deep and lasting grief, and now increasingly also refers to physicians, nurses, and other healthcare professionals who are devastated when someone they have been caring for dies. Studies have found that second victims’ symptoms are strongly similar to those of post-traumatic stress disorder, which include unavoidable memories of trauma, nightmares, difficulty concentrating, self-doubt, and even suicidal thoughts. Although we don’t know with certainty how many doctors have these symptoms or for how long, we do know that a high number of them consider career changes after particularly traumatic events—and that doctors kill themselves at an estimated rate of at least twice that of the average American.

In spite of growing awareness, far too little is being done by hospitals and professional groups to support second victims. There’s a longstanding expectation in our culture that doctors should be able to “soldier on.” Clinicians feel intense pressure from their institutions, colleagues, and even themselves to suppress human reactions for fear of appearing weak and jeopardizing their professional reputations. As a result, both physicians and the public tend to endorse the idea that anyone who can’t take the heat isn’t cut out for medicine. “Bad things happen in medicine all the time,” one doctor said in a study I conducted a few years ago, “Just deal with it.”

This doctor has a point; physicians cannot crumble any time they are faced with a tough situation. But research is starting to show that specific types of cases may be indelibly traumatic. Some of the factors in these cases that seem to correlate most highly with severe second-victim symptoms are unsurprising, like death and gruesome injuries. But there are other factors, too, like if the patient was a child, pregnant, or a victim of crime, and the extent to which a bad outcome was expected or could have been prevented. As well, there is a very powerful and personal sense of responsibility, maybe coupled with a feeling of having failed at one’s life work, when something tragic happens to a patient.

Ignoring this problem may be jeopardizing not only doctors’ well-being, but their patients’, too. After the loss of a patient, as one physician wrote me, “it is not uncommon in medicine for doctors and nurses to be asked to immediately move on to new patient care, without time to regroup, without time to grieve with the patient’s family, without time to debrief with other team members, and sometimes with barely enough time to complete the paperwork.” One study found that nearly 70 percent of doctors surveyed felt their ability to provide safe care was compromised by poor concentration and clouded judgment for at least a few hours after a catastrophic event; about 22 percent said this lasted a week or more. Yet only 7 percent received any time off. This is alarming.

So far, studies haven’t been done that can definitively tell us patients actually are harmed by healthcare professionals who don’t get the right support after bad incidents. And we aren’t even entirely sure what the right support entails. But there has been more attention lately on the many factors that could diminish a physician’s ability. Newer regulations are in place to ensure doctors in training aren’t excessively fatigued (limiting work schedules to 80 hours per week) and that they are adequately supervised. Licensure and board certification standards are becoming more stringent, and now require periodic re-certification (compared to the earlier standard in which board certification was good for life). And, we are seeing increased concern about aging physicians who may be too old to be at their best. Given this, shouldn’t we worry about a physicians’ emotional and psychological well-being, too?

True, it is a hard problem to address. It would cost hospitals money to relieve clinicians from duty and provide support services. Not all clinicians would want the same kind of support, and many would not recognize or admit if they needed it. But doctors are humans, just like the rest of us. We should want them to have feelings, empathy, and an invested connection with their patients.

Not everyone shares the “soldier on” mentality. One doctor responded to our survey: “No death is easy, even when it is expected.” Given the choice between a physician who brushes off death and one who feels the pain of patients and their loved ones, I’ll always take the second option. And I hope our society will support that physician in grief, so they don’t work on patients when not at their best. My life—or yours—could depend on it.

The post I Fear the Coldness of Doctors appeared first on Zócalo Public Square.

This year, the Affordable Care Act (ACA) had a profound and rapid change on my professional life as a physician who works in an institution that forms part of California’s safety net for those in need. I’m the chief medical officer for San Mateo Medical Center, the county hospital and affiliated clinics in San Mateo County. I also provide primary care in one of our outpatient clinics.

As a result of the ACA, many patients we serve in our county became newly eligible for Medi-Cal, California’s Medicaid program. With this transition, they were offered far more choices: They had access to services that were previously unavailable, such as dental services and expanded mental health services. And, instead of having to travel to our specialty clinic in the middle of the county, they could be referred to “private” specialists in their own communities. Far from luxuries, these new choices will help promote preventative care and early disease intervention; patients who in the past might have delayed a gallbladder or hernia surgery (and ended up in the emergency department with pain) can get prompt treatment with their new Medi-Cal coverage.

Before the ACA, most of our patients were either uninsured or were enrolled in a county program that only covered services at our institution; they could not seek care elsewhere. So more choice for patients means more pressure on us; as patients become eligible for Medi-Cal, they may now choose to leave our organization to seek care elsewhere. I will try to avoid clichés as I write this, but there is one that is especially appropriate here: “pressure makes diamonds.” I am seeing a spectacular gem being built around me here in San Mateo, far from flawless, but beautiful nonetheless.

Competition has forced us to confront some difficult questions, such as: What is the role of the safety net in this new era when many more people are insured? Why should we, as an institution, continue to exist? Thankfully the answers to these questions came fairly easily.

As an integrated health system, we offer a range of services from outpatient to emergency services to inpatient to long-term care; we offer a distinct advantage over the traditional fragmented health care system. Embedded in the San Mateo County Health System, we can work with our colleagues in Adult and Aging Services, Family Health Services, and Public Health to better meet all the psychosocial needs of our patients. For example, our partnership with the county’s Behavioral Health and Recovery Services has allowed us to embed behavioral health experts in our primary care clinics so that they can better address the mental health needs of our patients; this partnership also expands our ability to refer patients with drug and alcohol problems.

As our patients have moved to Medi-Cal, the ACA has brought our institution some new funding. But we realize that this will be short-lived; many of the new programs of the ACA are funded by reductions to other parts of the safety net. Such pressure is not new; safety net programs are often short of resources, forcing adjustments and redesigns. But the ACA ramps up this pressure on us to innovate, to find ways to do things cheaper and more efficiently.

Fortunately, we had a head start. We began almost a decade ago by redesigning our primary care services and establishing team based care. The county implemented an electronic health record in our clinics long before there was a mandate to do so. The ACA, through its resetting of priorities and funding mechanisms, offers us an opportunity to build on this foundation. We have repurposed some staff roles and brought in new staff members with new skill sets. For example, we have staffers who are specially trained to extract information from electronic records to better manage chronic disease, and pharmacists have been added to some primary care teams to assist with medication management.

The ACA has facilitated new partnerships with other community providers, allowing us to focus on those services that we provide well while partnering to provide services that are best delivered by others. This is a transition from the past, when we were the provider of last resort, forced to provide as much as we could and living, without the services we could not provide by ourselves.

One of our biggest investments has been in what we call our Lean transformation. Lean, based on the Toyota Production System, is a proven performance improvement methodology. Lean healthcare principles focus on increasing value by constantly improving quality and reducing defects and other wastes. Within the San Mateo County Health System, this transformation is being organized through our LEAP Institute. LEAP stands for Learn, Engage, Aspire, and Perfect (as a verb). As part of LEAP, we bring together teams that include line staff to observe and analyze our core processes–and then design new improved approaches that reduce waste and improve outcomes.

There is much work ahead, but much has already been accomplished. So far in 2014, we have brought almost 7,500 new patients into primary care facilitating better preventative health and chronic disease management. The majority of these patients are newly eligible for Medi-Cal. We have also seen a reduction of more than 20 percent in the number of patients leaving our emergency department without being seen due to long waits. We have seen an improvement in our performance on patient satisfaction surveys in a variety of areas including the Emergency and Inpatient Departments. And our pharmacy has reduced the time patients must wait for their prescriptions by about 75 percent. These are just a few of the gains. We look forward to many more.

The post Obamacare Is Turning Us Into a Better Hospital appeared first on Zócalo Public Square.

A bald health counselor holding a clipboard called me into a side room, asking politely how I’d been. He sat me down in a chair opposite his, and broke the news to me so fast that I hadn’t even thought to brace myself: “Patrick, your blood tested positive for HIV.”

I remember experiencing what I imagine rigor-mortis might feel like in my chest, I remember not listening to much of what was being said, and I remember that it wasn’t until after I left the Leeds Centre for Sexual Health and walked back onto campus that I finally cried. I collapsed onto a bench amongst the university’s brutalist architecture, next to a grid-like fountain, whose pattern seems only to be confusion, beneath a large bronze statue of Hermes, God of Transitions, my next appointment card crushed in my fist.

I was one of 725 new patients below the age of 24 to be diagnosed with HIV, the virus that causes AIDS, in the U.K. that year, out of a total of 2.5 million new infections worldwide. These numbers signify progress; this figure stood at 3.2 million in 2001 and decreased to 2.3 million in 2012 (the most recent statistics available).

I am among the first generation of HIV patients who can look forward to a practically normal life expectancy and little fear of developing full-blown AIDS due to access to antiretroviral drug therapy. There has never been more hope for patients with HIV than there is right now.

But that doesn’t change the crushing impact or seriousness of the diagnosis. And it doesn’t mean the danger has gone away. In fact, in July, the World Health Organization recommended that HIV negative men who have sex with men or “MSM” (the term epidemiologists use to cover gay and bisexual men) should take HIV medications similar to mine as preventative treatment because there has been an explosion of new cases among these men worldwide, bucking the trend of progress seen among other groups. Taking these medications preventively might only encourage complacency about the practice of safe sex and cause a rise in cases of other sexually transmitted diseases, bringing more people to waiting rooms like this one.

The Leeds Centre for Sexual Health is a fairly drab and dirty-looking building at one corner of the Leeds General Infirmary. The waiting room for men, which I visit every three months, is long and narrow, with seven uncomfortable benches made from high-backed blocks of gray-laminate chipboard padded with blue wipe-clean vinyl cushions. I’ve watched idle thumbs and nervous fingers pinch and pluck small holes in these cushions into gaping wounds of mustard-colored sponge. There’s no coffee machine, just a water cooler in case you are particularly dehydrated and they need a urine sample out of you.

Pin-boards are filled with posters and pamphlets that try to strike an uneasy editorial balance; they aim at being innocuous enough that you might not be too scared to actually read one of them and menacing enough that they might scare you into changing your undoubtedly terrible sexual habits. One of the more colorful examples aimed at MSM features an orgy of naked action figurines performing a rundown of would-be explicit sex acts accompanied by the relevant safety information under headings like “Water Sports.”

Some people employ the counterintuitive, rowdy approach to dealing with this space. Younger guys in baggy jeans and tracksuits come in with friends, talking about the size of their anatomy and trading expletive-laced barbs about sexual acts to distract themselves from their nervousness. Men in suits will try to keep up the appearance of normality as they loudly proclaim into their Bluetooth headsets things like, “I’m just at the bank.” One guy seemed particularly adept at this subterfuge: “I’m just on my way to the mosque to pray.”

The most common reaction, though, is to avoid socializing. We seat ourselves as far away from one another as possible, and each new entrant tries to split the largest gap he can find down the middle. We avoid eye contact: fixing our gaze at our feet, staring through old magazines or a phone, utilizing hats, hoods, and sunglasses to paint a fiction of looking incognito. The fear is that you’ll recognize somebody from the outside, or worse: They’ll recognize you.

It happens: Once I saw another student with whom I’d had a one-time thing. We hadn’t done anything risky, but I still panicked because I’d chosen not to reveal my status to him. As soon as I spotted him, I dived into the bench closest to the entrance and deliberately held my back toward him. Unfortunately, my doctor called “Patrick” at the far door soon after. I was forced to do a walk of shame right past him as she asked me to confirm my date of birth. Thankfully I hadn’t lied to him about my age; he had been more willing to ask me that question than he had been about anything important such as my HIV status.

I panicked, thinking he’d realize that for me this visit was a regular thing. I worried he’d judge me for not having told him before. If I just had the confidence to own my HIV status 100 percent of the time, perhaps I’d have found a friend like me and broken the strange spell of anonymity and alienation here.

HIV is a hidden disease. Twenty percent of people who have been infected don’t know they have it in the U.K. alone, and they are thought to be responsible for the majority of new infections. For those diagnosed, there is no law requiring HIV disclosure, provided precautions are taken. To disclose often means to be rejected, so many keep their status secret. And because so few of us talk about our diagnoses openly, perceptions of HIV as something that happens to other people have become rife.

Other people simply don’t care enough until it’s too late. I have had two partners, who were fully aware of my status, request unprotected sex anyway. One tried to convince me by saying, “If I get it I get it, that’s my fault and my problem.”

I will be on medication until the day I die, and meals and other activities are planned around when I have to take them. If you include all the medications I take to manage side effects like nausea, diarrhea, and sleep disrupted by lucid nightmares, I’m potentially written up for 36 pills per day. That’s not counting antibiotics I’ve needed to treat various infections that otherwise healthy people might have fought off unaided. I’ve even sought professional counseling for depression.

Though I’m now feeling good and coping well with my condition, I wouldn’t wish my regime of appointments or regimen of drugs and their side effects on my worst enemy. Every time I hear my name called from the far door of the waiting room, I get a twinge of the tight pain I felt in my chest when I got my diagnosis. It serves as a solemn reminder to me to take my condition seriously. I don’t want others to have to join me there on the blue benches, afraid to be honest about who we really are.

The post HIV-Positive and in the Waiting Room appeared first on Zócalo Public Square.