Saturday, September 6, 2008
Friday, September 5, 2008
In her second year of college, the poet Sarah Manguso developed a neurological disease so uncommon it doesn't even have a real name. The autoimmune condition, a rarer form of the already rare Guillain-Barré syndrome, is known as chronic idiopathic demyelinating polyradiculoneuropathy, and it took more than four years to run its course. For several of them, Manguso had to undergo periodic treatments in which her plasma was completely removed and replaced. The treatments worked, but sometimes only for a few days. Later, she moved to steroid treatments, which restored a degree of physical well-being but created complicated side effects. In her sharp, affecting new memoir, "The Two Kinds of Decay," Manguso writes from the far side of a long period of remission. "For seven years I tried not to remember much because there was too much to remember," she writes. From an original welter of experience, she has carefully culled details that remain vivid. Filtered through memory, events during her illness seem like "heavenly bodies" that "fly until they change into new forms, simpler forms, with ever fewer qualities and increasingly beautiful names." Manguso is acutely interested in these processes of renaming and remembering, the way time changes what we say about the past. Her book is not only about illness but also about the ways we use language to describe it and cope with it.
In her second year of college, the poet Sarah Manguso developed a neurological disease so uncommon it doesn't even have a real name. The autoimmune condition, a rarer form of the already rare Guillain-Barré syndrome, is known as chronic idiopathic demyelinating polyradiculoneuropathy, and it took more than four years to run its course. For several of them, Manguso had to undergo periodic treatments in which her plasma was completely removed and replaced. The treatments worked, but sometimes only for a few days. Later, she moved to steroid treatments, which restored a degree of physical well-being but created complicated side effects.
In her sharp, affecting new memoir, "The Two Kinds of Decay," Manguso writes from the far side of a long period of remission. "For seven years I tried not to remember much because there was too much to remember," she writes. From an original welter of experience, she has carefully culled details that remain vivid. Filtered through memory, events during her illness seem like "heavenly bodies" that "fly until they change into new forms, simpler forms, with ever fewer qualities and increasingly beautiful names." Manguso is acutely interested in these processes of renaming and remembering, the way time changes what we say about the past. Her book is not only about illness but also about the ways we use language to describe it and cope with it.
ALLEN: Looming health-care crisis
Friday, September 5, 2008
The U.S. Census Bureau this week reported the number of Americans without health insurance fell last year to 45.7 million, down from the previous estimate of 47 million. Good news for sure, but of little comfort to those families and individuals still without coverage.
Despite the positive development, access to health insurance will remain a major focus of the presidential campaigns, and with good reason. There is a looming health-care crisis in this nation, and candidates Barack Obama and John McCain offer different solutions to lower insurance costs and extend coverage universally.
The rhetoric sounds good on the stump, but it ignores the fact that universal health-care coverage won't do the nation any good if there aren't enough doctors to provide needed health-care services.
There is already a dire need for more physicians in this country, and fewer students opt to pursue a medical education even as demand for medical services grows. While America's physician population grows older, the math simply doesn't work in the patient's favor: The American Medical Association says 35,000 doctors per year reach retirement age while U.S. medical schools only graduate 8,000 new doctors annually in replacement.
The problem is exacerbated by a growing sense of discontent among younger physicians, driving them out of the profession. Last year, for example, the Massachusetts Medical Society found that more than one-third of doctors in the Bay State were considering abandoning the profession because of high stress, increasing administrative burdens, skyrocketing malpractice insurance costs, and the constant threat of lawsuits - conditions affecting physicians across the country.
In rural America, the problem is even more acute. In places like my home state of Missouri, physician shortages in rural communities have been a longstanding challenge to providing residents with quality health care. Average wait times to see a specialist - when you can find one - in many places are measured in weeks. In some locations, patients may need to drive an hour or more to find a doctor. Many go without.
The University of Missouri School of Medicine and other med schools have created innovative programs to encourage medical students to practice in underserved rural communities, but it's not enough. Jack Colwill, professor emeritus at the University of Missouri, co-authored a report in the May/June 2008 issue of the medical journal Health Affairs predicting a 44,000 shortfall in family and general practitioners by 2025 as more and more students chase more lucrative careers in nonessential specialties.
The promise of universal health care is attractive, to be sure, but the implications of such a remedy may be worse than the cure. We need only look to our north, to Canada, to understand the detrimental effect universal health care will have in our own country.
A 2006 survey by the College of Family Physicians of Canada found that, despite universal health care, 17 percent of Canadians go without regular care because they do not have a primary care physician. There simply aren't enough doctors to meet the demand.
The heart of medicine is the personal encounter: the coming together of physician and patient with the shared aim to relieve suffering and ideally heal the whole patient. But all too often the forces of modern medicine conspire against this ideal, narrowing the physician's role to that of expert on the body and leaving no room for a curious and compassionate connection, clear instruction, or even the extra second of attentive listening that might lead to a more informed diagnosis.
The resulting distress is felt on both sides of the stethoscope. Certainly it is experienced by the woman told by her oncologist "I think I can keep you alive for five years," and the man who is interrupted 18 seconds into his story about how he injured himself. But the physician also suffers when he avoids a terminally ill patient out of awkwardness or guilt, or misses a life-saving window because he downplayed the results of an ambiguous pathology report.
Every practitioner carries his or her own anthology of stories, says David Browning, Senior Scholar at the Institute for Professionalism and Ethical Practice (IPEP) at Children's Hospital Boston and Harvard Medical School, which operates the Program to Enhance Relational and Communication Skills (PERCS). He adds that practitioners also carry within them an understanding of how to communicate and respond with empathy – that knowledge just gets lost in the time constraints and financial pressures of contemporary practice and education. As a result, while physicians may feel capable of managing a range of physical ailments, many feel less equipped to handle their patients' emotions.
Whether it's the need to tell someone he has a terminal disease, disclose a treatment error, explain the details of an unexpected condition, or simply take a thorough history during a routine physical exam, evidence shows that effective and empathic communication not only alleviates suffering, but it plays a role in the quality of care.
Thursday, September 4, 2008
My name is Kevin Pho, and I am a primary care physician board-certified in Internal Medicine. My practice is located in Nashua, New Hampshire.
People not involved in healthcare have no idea what goes on "behind the curtain." The struggles of primary care, defensive medicine, malpractice, reimbursement, and emergency room woes are a small sample of issues that doctors face daily.
This blog aims to pull that curtain back and "tell it like it is." By shining a light on physician frustrations that the mainstream media may ignore, perhaps we can get one step closer to resolving these issues.
medical blogosphere. It is hosted by a different medical blogger each
week with the rest of the blogosphere submitting their best writing to
be featured in that week's Grand Rounds.
How Much Progress Have Psychology and Psychiatry Really Made? A Freakonomics Quorum
We invited some people who think a lot about such issues — David B. Baker, John Medina, Dan Ariely, Satoshi Kanazawa, Peter D. Kramer, and Laurie Schwartz — and asked them the following:
How much progress have psychology and psychiatry really made in the last century? Do we know enough about the human psyche to prescribe the medication that we do?
Here are their answers. Thanks much for their participation and insights.
John Medina, a developmental molecular biologist, author of Brain Rules, an affiliate professor of bioengineering at the University of Washington School of Medicine, and columnist for the Psychiatric Times.
“I certainly applaud the point of view of explaining psychological processes in biological terms … I am also the first to admit, however, that the view we get can be very disturbing.”
How much progress has psychology really made in the last century? A lot, though the journey has been depressingly uneven.
List of Medical Wikis:
Consumer Health and Patient Education Information Search Engine:
Medical Library Search Engine
The core of this blog is medical anthropology – the majority of the authors are anthropologists who work on medical topics; however, we’re particularly interested in the borders between anthropology and a number of neighboring disciplines: namely, science and technology studies (STS), cultural psychiatry and bioethics. Ultimately the topics which we cover will be up to the individual authors, and I hope that as we develop this weblog as a collaborative project, it will gain its own identity as a space for creative thinking and intellectually stimulating discussion.
One of the more challenging aspects of the medical humanities -- as well as one of its greatest strengths -- is its interdisciplinary nature. While this interdisciplinarity is significant in a variety of ways, it does tend to make research something of a challenge. This is mostly because there is obviously no central database, commercial or otherwise, that compiles articles and sources from disciplines as different as philosophy, art, literature, anthropology, sociology, history, and religion, for example. Thus, one of the primary initial functions of this MH weblog will be to act, in effect, as a literature metacrawler.
I will periodically (at least twice a month) survey about 20 -25 journals that seem most relevant to the medical humanities, and will compile the abstracts on this blog. This blog will obviously be searchable, so the hope is that, over time, this blog will serve in part as an index of some of the more recent sources of research and theory in the medical humanities. There is already a medical humanities database project, and, ideally, this blog will exist as a supplement to that sorely needed database.
In addition, I will survey the Social Science Research Network for manuscripts and articles that are relevant and available. One of the many advantages of SSRN is that the articles on the website are available for download without a subscription to a commercial database. Thus, where possible, I will link to SSRN.http://www.medhumanities.org/
Clear communication is an important part of medical care, and just like learning to speak Medicalese and present cases in 5 words to a grumpy consultant over the phone at 3am, is an important aspect of medical education. Many GPs complain (often with VERY good reason) about the information (or lack thereof) that they get back from the hospital about their patients. Many hospitalists complain about all the paperwork they have to do which takes up a large amount of their time.
Grand Rounds Vol. 4 No. 50: Getting Some Education
Welcome to this week’s Grand Rounds. As I revised syllabi and edited assignments for the upcoming semester, I couldn’t help but think that an Education theme was appropriate for a post-Labor Day edition. Whether you’re heading back to a classroom, an office, or a hospital today, hopefully this selection of posts will resonate with you.
An 87 year old man transferred for direct admission from a local nursing home.
What I see:
CAD with a hx of CABG (coronary artery disease with a history of coronary artery bypass grafting)
AF (atrial fibrillation)
HTN, uncontrolled (hypertension)
COPD (chronic obstructive pulmonary disease)
DMII (diabetes mellitus type two)
CKD stage IV (chronic kidney disease stage four) baseline glomerular filtration rate of 18
PVD (peripheral vascular disease)
GERD (gastroesophageal reflux disease)
What the family sees:
Dad/Grandpa was just put into the nursing home a few weeks ago. He's been falling. He tore up his leg a few weeks prior. He just seems so weak. Mom couldn't take care of him. It's only temporary. We are fixing things up at the house so when he comes back it will be safer. This is only temporary. He's been using his walker pretty heavily for the last 6 months. He doesn't move much anymore regardless.
What I'm a bit surprised is how the hospital administration managed to "rectify" the error and came out with better policies to prevent future incidents like this to happen. Their CEO even blogged about it, so the whole community would know about the lapses, the steps taken to correct it, and prevent further "errors" to happen in the same way.
I can help but wonder if most of our health institutions here in our country have the same attitude towards wrong site surgery and medical errors. A universal protocol for wrong site surgery has been existing and updated regularly for quite sometime already. The American Academy of Orthopedic Surgeons (AAOS) also had its recommendations to reduce surgical sites error in orthopedics. Most of the stories I hear in our country from the gossip tree end up in long, expensive court duels. And even with the pay off, none of the parties learned anything (but money and pride) from the mistakes which should have been preventable in the first place!
Not to be over simplistic about this but parallelisms can be drawn between mistakes like this one and that of mistakes done on people you care of. Admission is a braved act. Facing the consequences is an even braver act. But taking actions to prevent such errors from happening is a mark of a true caring physician. That is how we deal with people we care. To us physicians, that would be our patients.
What's the Trouble?
How doctors think.
On a spring afternoon several years ago, Evan McKinley was hiking in the woods near Halifax, Nova Scotia, when he felt a sharp pain in his chest. McKinley (a pseudonym) was a forest ranger in his early forties, trim and extremely fit. He had felt discomfort in his chest for several days, but this was more severe: it hurt each time he took a breath. McKinley slowly made his way through the woods to a shed that housed his office, where he sat and waited for the pain to pass. He frequently carried heavy packs on his back and was used to muscle aches, but this pain felt different. He decided to see a doctor.
Pat Croskerry was the physician in charge in the emergency room at Dartmouth General Hospital, near Halifax, that day. He listened intently as McKinley described his symptoms. He noted that McKinley was a muscular man; that his face was ruddy, as would be expected of someone who spent most of his day outdoors; and that he was not sweating. (Perspiration can be a sign of cardiac distress.) McKinley told him that the pain was in the center of his chest, and that it had not spread into his arms, neck, or back. He told Croskerry that he had never smoked or been overweight; had no family history of heart attack, stroke, or diabetes; and was under no particular stress. His family life was fine, McKinley said, and he loved his job.
Croskerry checked McKinley's blood pressure, which was normal, and his pulse, which was sixty and regular—typical for an athletic man. Croskerry listened to McKinley's lungs and heart, but detected no abnormalities. When he pressed on the spot between McKinley's ribs and breastbone, McKinley felt no pain. There was no swelling or tenderness in his calves or thighs. Finally, the doctor ordered an electrocardiogram, a chest X-ray, and blood tests to measure McKinley's cardiac enzymes. (Abnormal levels of cardiac enzymes indicate damage to the heart.) As Croskerry expected, the results of all the tests were normal. "I'm not at all worried about your chest pain," Croskerry told McKinley, before sending him home. "You probably overexerted yourself in the field and strained a muscle. My suspicion that this is coming from your heart is about zero."http://www.newyorker.com/reporting/2007/01/29/070129fa_fact_groopman?printable=true
Medicine’s money problem.
by Atul Gawande
To become a doctor, you spend so much time in the tunnels of preparation—head down, trying not to screw up, trying to make it from one day to the next—that it is a shock to find yourself at the other end, with someone shaking your hand and asking how much money you want to make. But the day comes. Two years ago, I was finishing my eighth and final year as a resident in surgery. I had got a second interview for a surgical staff position at the Brigham and Women’s Hospital, in Boston, where I had trained. It was a great job—I’d get to specialize in surgery for certain tumors that interested me, but I’d also be able to do some general surgery. On the appointed day, I put on my fancy suit and took a seat in the wood-panelled office of the chairman of surgery. He sat down opposite me and then he told me the job was mine. “Do you want it?” Yes, I said, a little startled. The job, he explained, came with a guaranteed salary for three years. After that, I would be on my own: I’d make what I brought in from my patients and would pay my own expenses. So, he went on, how much should we pay you?
After all those years of being told how much I would either pay (about forty thousand dollars a year for medical school) or get paid (about forty thousand dollars a year in residency), I was stumped. “How much do the surgeons usually make?” I asked.
He shook his head. “Look,” he said, “you tell me what you think is an appropriate income to start with until you’re on your own, and if it’s reasonable that’s what we’ll pay you.” He gave me a few days to think about it.
Wednesday, September 3, 2008
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Susan Sontag's final wish
She wanted hope, a reason to believe she would survive cancer. In a candid interview, her son, David Rieff, discusses his mother's battle to live and his struggle to hide the truth.http://www.salon.com/books/feature/2008/02/13/david_rieff/print.html
In this feverish season of Hillary watching, Simon and Schuster has just offered up the story of another remarkable American woman, Susan Sontag, for us to analyze and interpret through the eyes of her son, journalist David Rieff. His memoir of his mother's final year battling cancer, Swimming in a Sea of Death, is riveting, provocative, and heartbreaking. It forces us to ask ourselves how we deal with the terminal illness of a loved one, and makes Rieff's private burden public: how to care for a demanding mother who refused to accept even the possibility of death, much less its imminent certainty.
Having recently witnessed the death of both my parents, I, too, have had to swim in this sea, to live with guilt and regret at what I didn't do and wish I had done. Few of us weather the death of a loved one without second thoughts. Rieff's book is a moving account of his own situation, and might serve a larger cause by encouraging conversations about the complicated art of dying. Now that we're beyond shame in talking about sex and money, candor about dying could be our last great taboo.
In the unlikely event anyone failed to notice her when she was alive -- on the front covers of her own books, in magazines, on Nightline -- Annie Leibovitz's lavish Photographer's Life: 1990-2005, made that oversight easy to correct. And it raised plenty of eyebrows with shots of Sontag's body in her coffin. Those who wondered how Rieff felt about these pictures will find only a single seething phrase in his memoir. He believes his mother was "humiliated posthumously by being 'memorialized' that way in those carnival images of celebrity death."
There's little else in Swimming in a Sea of Death that smacks of anger or revenge except Rieff's rage at the euphemistic language of some medical brochures. In fact, he tells us that during this year of tending Sontag, he consciously decided to take no notes, wanting instead to feel the experience head on. And what an experience it was: Diagnosed with a blood cancer for which there is no treatment, Sontag refused to go gently. She discovered an experimental treatment involving a bone marrow transplant, which her doctor recommended she have done at a clinic in Washington state. Rieff doesn't say so in his book, though he reported in an article in The New York Times that Medicare and Sontag's health insurance company refused to pay for the treatment. To be admitted, she had to give the hospital a cash deposit of more than $250,000.
Having beaten cancer twice before, she was certain she would beat it again, though her chances were miniscule. Long before she was bedridden, she was so consumed with anxiety at the possibility of her "extinction," she needed company around the clock. Even tranquilizers didn't calm her fears. Throughout months of toxic treatments that destroyed her immune system, even through her ravaged final weeks, she refused to accept the truth.
Rieff writes that "... almost until the moment she died, we talked of her survival, of her struggle with cancer, never about her dying. I was not going to raise the subject unless she did. It was her death, not mine. And she did not raise it. To have done so would have been to concede that she might die and what she wanted was survival, not extinction--survival on any terms. To go on living: perhaps that was her way of dying." Rieff, though, often felt like "an accomplice," and the most moving material in the book is about his ambivalence in the role she demanded of him and others: to confirm her magical thinking.
Because Sontag never wanted to face her death, she and her son never said goodbye to each other. Nor did she express any wishes about what would happen after. All he knew was that "she had a horror of cremation," and so he chose to bury her in Montparnasse Cemetery in Paris, near the remains of Simone de Beauvoir and Samuel Beckett, a choice, one can't help but feel, she would have applauded.
Never having had said proper goodbyes to either of my own parents, I know some of what it is to swim in this dark sea. But because I knew Sontag only from a distance, through her writing, what others have written and said about her, and now, through her son's eyes, I see her without the weight of guilt, anger, and love. Her brilliance shines through, as does her charisma, her love of life, her ambition, her despair, and her particular brand of narcissism, a thundering self-involvement that forces those around her into the roles of flatterers and abject enablers in the maintenance of her fantasies. Rieff wonders throughout the book whether he should have confronted his mother with the reality of her death, instead of pretending it would not happen. One can only imagine that if he had, she would have refused to listen.
He writes: "My mother had always thought of herself as someone whose hunger for truth was absolute. After her diagnosis, the hunger remained, but it was life and not truth that she was desperate for. I hope I did the right thing in trying to give it to her, but I will never be sure. But she was clear about what she wanted and to the extent that I am consolable about the role I played, this is what consoles me: She was entitled to die her own death." (102)
Of course she is. There should be nothing more elemental than our right to chose our death, whether we fight to the bitter end or take our lives to spare ourselves and our loved ones the horrors of crushing illnesses. What's truly sad about Sontag's choice is that as a mother, she could not look beyond her own fears and consider what this choice meant for her child, not to mention her other loved ones.
The tragedy for me in Swimming in a Sea of Death is not Sontag's death but her having left her son this self-centered bequest: instead of her love, her anger at the fact of having to die. Like a child herself, it's as though she died stamping her feet and crying out, "This is so unfair to me!" Is it any wonder that Rieff feels such guilt? Any wonder that he is burdened by the thought that parents often have when a child dies: "There are times when I wish I could have died in her place." My heart breaks when he writes that he wishes he could have suppressed his "own interests in the furtherance of hers" and when he says, "I wish that I had lived, while she was alive and well, with the image of her death at the forefront of my consciousness."
There is nothing that narcissists do better than force the rest of us to see our own lives through the prism of their lives, to sign up for their delusions and self-centered wishes. From all the evidence, from Terry Castle's essay, "Desperately Seeking Susan" in the London Review of Books to Rieff's memoir, Sontag excelled at making herself the center of attention. In his interview with Terry Gross on "Fresh Air," Rieff revealed that his mother sold her diaries to UCLA and that he is editing all three volumes. As she did in life, during her final struggle with death, and now that she has been laid to rest, this dazzling woman -- writer, provocateur, celebrity, single mother -- will engage us for a long time to come. Ironically, through her son's bold, unflinching account of her refusal to accept her "extinction," she may even help us begin public and private conversations about dying that are long overdue.http://www.huffingtonpost.com/elizabeth-benedict/can-we-talk-about-susan-s_b_81386.html
Illness as More Than Metaphor
My mother, Susan Sontag, lived almost her entire 71 years believing that she was a person who would beat the odds. Even during the last nine months of her life, after she was discovered to have myelodysplastic syndrome, or M.D.S., a particularly virulent blood cancer, she continued to persevere in the belief that she would be the exception. M.D.S. is technically a precursor to acute myeloid leukemia. On average, its survival rates across the generational cohorts are no better than 20 percent, and far worse for a woman in her early 70's who had had cancer twice before. It wasn't that she didn't know that the biological deck was stacked against her; as someone who prided herself on her ability to grasp medical facts, she knew it only too well. In the immediate aftermath of her diagnosis, she went online to learn all she could about M.D.S. and despaired as the fact of its lethality sank in. But that despair was almost the flip side of a lifelong confidence in her ability to defy the odds. "This time, for the first time," she told me, "I don't feel special."
Regrets After Prostate Surgery
One in five men who undergoes prostate surgery to treat cancer later regrets the decision, a new study shows. And surprisingly, regret is highest among men who opt for robotic prostatectomy, a minimally invasive surgery that is growing in popularity as a treatment.
The research, published in the medical journal European Urology, is the latest to suggest that technological advances in prostate surgery haven’t necessarily translated to better results for the men on which it is performed. It also adds to growing concerns that men are being misled about the real risks and benefits of robotic surgical procedures used to treat prostate cancer.
Of the 219,000 men in the United States who learn they have prostate cancer each year, nearly half undergo surgical removal of the gland, according to the National Cancer Institute.
Duke University researchers surveyed 400 men with early prostate cancer who had undergone either a traditional “open” surgical procedure or newer robotic surgery to remove the prostate. Overall, the vast majority of men were satisfied. However, 19 percent regretted their treatment choice. Notably, men who had undergone robotic surgery were four times more likely to regret their choice than men who had undergone the open procedure.
Researchers say the higher level of regret among robotic patients suggests that they had higher expectations for their recovery, possibly because the robotic procedure is widely touted as a more innovative surgery than traditional prostatectomy. Even among men who had the same scores on erectile function and other measures of post-surgery recovery, the robotic patients still reported a higher level of dissatisfaction and regret than other men.
Part of the problem may be that doctors who perform robotic prostatectomies commonly cite potency rates as high as 95 percent and above among their patients, giving patients an unrealistic view of life after surgery.
But the data are highly misleading. Researchers often define potency as simply being able to achieve an erection that is “adequate” for intercourse — but for many men, that definition doesn’t capture their ongoing struggle to return to a normal sex life. Earlier this year, researchers from George Washington University and New York University used a more realistic definition of potency, showing that after surgery, fewer than half of the men studied felt their sex lives had returned to normal within a year.
Another important finding of the new research showed that men were less likely to regret their choice shortly after surgery. The men who were long past surgery experienced more regret. That finding likely speaks to the fact that as time passes after surgery, men gain a more realistic view of lingering health and quality-of-life issues like erection problems and other changes in their sex lives.
The Duke researchers said that the study shows urologists need to communicate more carefully the risks and benefits of the treatment prior to surgery so that men have more realistic expectations of what to expect.
Six Rules Doctors Need to Know
Why are patients mad at doctors? Maybe, suggests medical blogger Dr. Robert Lamberts, it’s because doctors aren’t following the rules.
Doctors have always been a hot topic of discussion on the Well blog. We’ve talked about the rocky relationship between doctors and patients, a doctor’s disdain for medical Googlers, and whether doctors should lecture patients about their weight. And every time, hundreds of readers comment about how frustrated they are with doctors and the medical system.
Dr. Lamberts, an Augusta, Ga., physician and writer of Musings of a Distractible Mind, notes that he has a few simple rules that help him get along better with his patients.
Doctor and Patient, Now at Odds
By TARA PARKER-POPE
A growing chorus of discontent suggests that the once-revered doctor-patient relationship is on the rocks.
The relationship is the cornerstone of the medical system — nobody can be helped if doctors and patients aren’t getting along. But increasingly, research and anecdotal reports suggest that many patients don’t trust doctors.
About one in four patients feel that their physicians sometimes expose them to unnecessary risk, according to data from a Johns Hopkins study published this year in the journal Medicine. And two recent studies show that whether patients trust a doctor strongly influences whether they take their medication.
The distrust and animosity between doctors and patients has shown up in a variety of places. In bookstores, there is now a genre of “what your doctor won’t tell you” books promising previously withheld information on everything from weight loss to heart disease.
The Internet is bristling with frustrated comments from patients. On The New York Times’s Well blog recently, a reader named Tom echoed the concerns of many about doctors. “I, as patient, say stop acting like you know everything,” he wrote. “Admit it, and we patients may stop distrusting your quick off-the-line, glib diagnosis.”
Doctors say they are not surprised. “It’s been striking to me since I went into practice how unhappy patients are and, frankly, how mistreated patients are,” said Dr. Sandeep Jauhar, director of the heart failure program at Long Island Jewish Medical Center and an occasional contributor to Science Times.
He recounted a conversation he had last week with a patient who had been transferred to his hospital. “I said, ‘So why are you here?’ He said: ‘I have no idea. They just transferred me.’
“Nobody is talking to the patients,” Dr. Jauhar went on. “Everyone is so rushed. I don’t think the doctors are bad people — they are just working in a broken system.”
The reasons for all this frustration are complex. Doctors, facing declining reimbursements and higher costs, have only minutes to spend with each patient. News reports about medical errors and drug industry influence have increased patients’ distrust. And the rise of direct-to-consumer drug advertising and medical Web sites have taught patients to research their own medical issues and made them more skeptical and inquisitive.
“Doctors used to be the only source for information on medical problems and what to do, but now our knowledge is demystified,” said Dr. Robert Lamberts, an internal medicine physician and medical blogger in Augusta, Ga. “When patients come in with preconceived ideas about what we should do, they do get perturbed at us for not listening. I do my best to explain why I do what I do, but some people are not satisfied until we do what they want.”
Others say the problem also stems from a grueling training system that removes doctors from the world patients live in.
“By the time you’re done with your training, you feel, in many ways, that you are as far as you could possibly be from the very people you’ve set out to help,” said Dr. Pauline Chen, most recently a liver transplant surgeon at the University of California, Los Angeles, and the author of “Final Exam: A Surgeon’s Reflections on Mortality” (Knopf, 2007). “We don’t even talk the same language anymore.”
Dr. David H. Newman, an emergency room physician at St. Luke’s-Roosevelt Hospital Center in Manhattan, says there is a disconnect between the way doctors and patients view medicine. Doctors are trained to diagnose disease and treat it, he said, while “patients are interested in being tended to and being listened to and being well.”
Dr. Newman, author of the new book “Hippocrates’ Shadow: Secrets from the House of Medicine” (Scribner), says studies of the placebo effect suggest that Hippocrates was right when he claimed that faith in physicians can help healing. “It adds misery and suffering to any condition to not have a source of care that you trust,” Dr. Newman said.
But these doctors say the situation is not hopeless. Patients who don’t trust their doctor should look for a new one, but they may be able to improve existing relationships by being more open and communicative.
Eyes Bloodshot, Doctors Vent Their Discontent
“I love being a doctor but I hate practicing medicine,” a friend, Saeed Siddiqui, told me recently. We were sitting in his office amid his many framed medical certificates and a poster of an illuminated lighthouse that read: “Success doesn’t come to you. You go to it.”
A doctor in his late 30s, he has been in practice for six years, mostly as a solo practitioner. But he told me he recently had decided to go into partnership with another cardiologist; his days, he said, will be “totally busy.”
“Your days aren’t busy enough already?” I asked.
The waiting room was packed. He had a full schedule of appointments, and after he was done with his office patients, he was going to round at two hospitals.
He smiled wanly. “Just look at my eyes.”
They were bloodshot.
“This whole week I haven’t slept more than about six hours a night.”
I asked when his work usually got done.
“It is never done,” he replied, shaking his head. “See this pile?”
He pointed to five large manila packages on a shelf above his desk. “These are reports I still have to finish.”
As a physician, I could empathize. I too often feel overwhelmed with paperwork. But my friend’s discontent seemed to run much deeper than that. Unfortunately, he is not alone. I have been hearing physician colleagues voice a level of dissatisfaction with medical practice that is alarming.
In a survey last year of nearly 2,400 physicians conducted by a physician recruiting firm, locumtenens.com, 3 percent said they were not frustrated by nonclinical aspects of medicine. The level of frustration has increased with nearly every survey.
“It will take real structural change in the work environment for physician satisfaction to improve,” Dr. Mark Linzer, an internist at the University of Wisconsin who has done extensive research on physician unhappiness, told me. “Fortunately, the data show that physicians are willing to put up with a lot before giving up.”
Not long ago, fed up with what he perceived as a loss of professional autonomy, Dr. Bhupinder Singh, 42, a general internist in New York, sold his practice and went to work part time at a hospital in Queens.
“I’d write a prescription,” he told me, “and then insurance companies would put restrictions on almost every medication. I’d get a call: ‘Drug not covered. Write a different prescription or get preauthorization.’ If I ordered an M.R.I., I’d have to explain to a clerk why I wanted to do the test. I felt handcuffed. It was a big, big headache.”
When he decided to work in a hospital, he figured that there would be more freedom to practice his specialty.
“But managed care is like a magnet attached to you,” he said.
He continues to be frustrated by payment denials. “Thirty percent of my hospital admissions are being denied. There’s a 45-day limit on the appeal. You don’t bill in time, you lose everything. You’re discussing this with a managed-care rep on the phone and you think: ‘You’re sitting there, I’m sitting here. How do you know anything about this patient?’ ”
Recently, he confessed, he has been thinking about quitting medicine altogether and opening a convenience store. “Ninety percent of doctors I know are fed up with medicine,” he said.
And it is not just managed care. Stories of patients armed with medical knowledge gleaned from the Internet demanding antibiotics for viral illnesses or M.R.I. scans for routine symptoms are rife in doctors’ lounges. Malpractice worries also remain at the forefront of many physicians’ minds, compounded by increasing liability premiums that have forced many into early retirement.
In surveys, increasing numbers of doctors attest to diminishing enthusiasm for medicine and say they would discourage a friend or family member from going into the profession.
The dissatisfaction would probably not have reached such a fever pitch if reimbursement had kept pace with doctors’ expectations. But it has not.
Doctors are working harder and faster to maintain income, even as staff salaries and costs of living continue to increase. Some have resorted to selling herbs and vitamins retail out of their offices to make up for decreasing revenue. Others are limiting their practices just to patients who can pay out of pocket.
There are serious consequences to this discontent, the most worrisome of which is that it is difficult for doctors who are so unhappy to provide good care.
Another is a looming shortage of doctors, especially in primary care, which has the lowest reimbursement of all the medical specialties and probably has the most dissatisfied practitioners.
Last year, residency programs in family practice took only 1,096 graduating medical students, the fewest in the last two decades. The number increased just slightly this year. Students who do choose internal medicine increasingly are forgoing primary care for subspecialty practices like cardiology and gastroenterology.
“For me it’s an endless amount of work that I can never get through to do it properly,” said Dr. Jeffrey Freilich, 38, a primary-care physician on Long Island. “I’m a bit compulsive. As an internist, I have to worry about working up so many conditions — anemia, thyroid problems and so forth. There is no time to do it all in a day.
“On top of all that, there are all the colonoscopies and mammograms you have to arrange, and all the time on the phone getting preauthorizations. Then you have to track the patient down. And none of it is reimbursed.”
Many primary-care physicians have stopped seeing their patients when they are hospitalized, relying instead on hospitalists devoted to inpatient care. Internists have told me that it is prohibitively inefficient to drive to a hospital, find parking, walk to the wards, examine a patient, check laboratory tests and vital signs, talk to a nurse and write orders and a note — for just a handful of cases. They cannot afford to leave their offices long enough to do it.
The upshot is that the doctor who knows a patient best is often uninvolved in her care when she is hospitalized. This contributes to the poor coordination and wanton consultation that is so common in hospitals today.
“Years ago you had one or two doctors,” a hospitalized patient told me recently. “Now you’ve got so many people coming in it’s hard to know who’s who.”
A 10.6 percent cut in Medicare payments to physicians is scheduled to take effect on July 1. Further cuts are planned in coming years. Many doctors have told lawmakers that if the cuts go through, they will stop seeing Medicare patients. But reimbursement cuts are only a small part of doctors’ woes today.
“I was naïve,” Saeed Siddiqui said. “When I was a resident I thought it was enough to take good care of patients. But the real world is totally different.”
It's easy to imagine that doctors don't get sick. Surely the hygienic shield of the sterile white coat guards them from ever having to put on the flapping gown and flimsy bracelet, climb meekly into the crisp bed and be at the mercy of the U.S. health-care system. And if somehow they did enter the hospital as a patient, physicians ought to have every advantage: an insider's knowledge, access to top specialists, built-in second opinions, no waiting, no insane bureaucratic battles and no loss of identity or dignity when you turn into the "bilateral mastectomy in Room 402." But it doesn't usually work that way. While doctors are often in a better position than most of us to spot the hazards in the hospital and the holes in their care, they can't necessarily fix them. They can't even avoid them when they become patients themselves. l When Dr. Lisa Friedman felt the lump in her breast in the summer of 2001, she did—nothing. "I just sat on it," she says, "because I clicked into the mode of being physician, not patient, and I thought, 'Most lumps are not cancer, I'll just watch this.'" That was her first mistake.
By September Friedman had watched long enough. An internist in a practice that covers much of southern Wisconsin, she went to her radiology department to schedule a mammogram. The administrators turned her down: her HMO paid for routine mammograms every two years, and she'd had one 18 months before. "I said, 'Wait a minute, I feel a lump. This is not routine.' They still wouldn't let me do it." This is the stuff bad movies are made of. Friedman had to appeal to the HMO's board of directors. "I said, 'I'll pay for my own mammogram. Just let me get it done.'" She won her appeal and finally had the test. "They didn't even have to do a biopsy," she says. "The radiologist just looked at it and said, 'Oh, my God. You've got breast cancer.'"
The education of Lisa Friedman, patient, had begun. Like any other patient—and perhaps even more so—she had to drag information out of her physicians. "They were treating me like I was knowledgeable, but they weren't listening to me." When she found out that the cancer had spread to several places in one breast, Friedman told her surgeon there was no need to preserve her breast for cosmetic reasons; she was more concerned that the cancer be entirely removed. She asked for a mastectomy—but she was told that a lumpectomy would do the job fine. "I went along with it," she said. That was her second mistake. Her breast was riddled with tumors. "They ended up doing three lumpectomies. They were cutting away at my breast until I had no breast left. I said, 'Will you please take it all off?'"
Friedman's doctors weren't incompetent. They didn't operate on the wrong breast or give her the wrong drugs or commit any egregious medical errors—and that is the whole point. While there are bad doctors practicing bad medicine who go undetected, that's not what scares other physicians the most. Instead, they have watched the system become deformed over the years by fear of litigation, by insurance costs, by rising competition, by billowing bureaucracy and even by improvements in technology that introduce new risks even as they reduce old ones. So doctors resist having tests done if they aren't absolutely sure they are needed. They weigh the advantages of teaching hospitals at which you're more likely to find the genius diagnostician vs. community hospitals where you may be less likely to bring home a nasty hospital-acquired infection. They avoid having elective surgery in July, when the new doctors are just starting their internships in teaching hospitals, but recognize that older, more experienced physicians may not be up to date on the best standards of care.
Most doctors freely admit that they do everything they can to work the system. "As much as we all value fairness, if you think you can get some special attention for someone who's important to you ... I don't know anybody who would not play that card," says Michael McKee, vice chairman of psychology and psychiatry at the Cleveland Clinic. But talk to doctors about their experiences and you'll be surprised by how little power they have to bend the system to their will. This is one abiding irony of progress. The most wondrous technology exists that can pinpoint the exact location of a tumor, thread a tiny catheter up into the brain to open a clogged artery, pulverize a kidney stone without breaking the skin. But the simple stuff—like getting an mri on time, being given the right drugs at the right time, making sure everyone knows which side of your brain to operate on—can cause the biggest problems. "A patient with anything but the simplest needs is traversing a very complicated system across many handoffs and locations and players," says Dr. Donald Berwick, a pediatrician and president of the Institute for Healthcare Improvement. "And as the machine gets more complicated, there are more ways it can break."http://www.time.com/time/printout/0,8816,1185743,00.html
PART 1 | OVERWHELMED BY CHOICES
Awash in Information, Patients Face a Lonely, Uncertain Road
By JAN HOFFMAN
The modern patient copes with the blessing and burden of receiving a superabundance of information, often several treatment options and the right to choose among them.
• Patients Turn to Support Groups and E-Mail
PART 2 | A LOSS OF DIGNITY
In the Hospital, a Degrading Shift From Person to Patient
By BENEDICT CAREY
Within the medical system, the small courtesies of life are often neglected precisely when they are needed most.
PART 3 | ENDLESS DELAYS
Sick and Scared, and Waiting, Waiting, Waiting
By GINA KOLATA
Waiting has long been part of medicine, but health care researchers say the problem has only gotten worse.
• Health Minutes Video: Gina Kolata on Endless Delays
PART 4 | SICK AND ALONE
Alone in Illness, Seeking Steady Arm to Lean On
By JANE GROSS
People who live alone can end up being their own quarterbacks at a particularly vulnerable time.
• Where to Get Help in Planning for Illness
PART 5 | THE PAPER MAZE
Treated for Illness, Then Lost in Labyrinth of Bills
By KATIE HAFNER
Millions of Americans find themselves devoting enormous amounts of time and energy to sorting out their medical bills.
• Helping Patients Decode the Bill | Graphic
PART 6 | THE MONEY TRAP
When Health Insurance Is Not a Safeguard
By JOHN LELAND
Many families, even ones with insurance, do not realize how vulnerable they are to high medical costs until the bills arrive.
• When Illness Packs a Financial Punch
PART 7 | GOING FIRST CLASS
For a Retainer, Lavish Care by 'Boutique Doctors'
By ABIGAIL ZUGER
A new breed of "concierge" doctors are lavishing time and attention on patients in exchange for a yearly cash retainer.
PART 8 | THE AMATEUR PHARMACISTS
Young, Assured and Playing Pharmacist to Friends
By AMY HARMON
Confident of their abilities and skeptical of psychiatrists, a sizable group of people are deciding on their own what drugs to take.
• Finding Information Online From Peers and Professionals
PART 9 | DIFFICULT DOCTORS
When the Doctor Is in, but You Wish He Weren't
By GINA KOLATA
In an era where doctors are spending less time with each patient, some physicians are blatantly ignoring their requests.
• Readers Respond
PART 10 | ILL AND AT WORK
When a Worker's Health Crisis Deteriorates Into a Job Crisis
By LISA BELKIN
How an employee is treated after becoming a patient is determined by things like workplace culture and the boss's sensitivity.
PART 11 | THE ETHICS OF HOPE
Doctors' Delicate Balance of Keeping Hope Alive
By JAN HOFFMAN
Efforts are being made across the medical community to grapple with the language and ethics of hope.
PART 12 | OPTING OUT
When Trust in Doctors Erodes, Other Treatments Fill the Void
By BENEDICT CAREY
In ways large and small, millions of people are taking active steps to venture outside the mainstream of traditional health care.
PART 13 | SICK IN A STRANGE LAND
Recourse Grows Slim for Immigrants Who Fall Ill
By NINA BERNSTEIN
In the last decade, more and more immigrants are delaying care or retreating to bootleg drugs and unlicensed practitioners.
PART 14 | BEYOND FRUIT COCKTAIL
For Hospital Menus, Overdue Surgery
By KIM SEVERSON
When you're sick, you want tasty, comfort food. But only recently have hospitals, driven by patients' complaints, started to provide it.