Saturday, September 28, 2013

Personal History: An Enlarged Heart : The New Yorker

It began with a cough. Her brother had a cough. And, after all, what was a cough? They had all had them. In winter, they passed them around like sweets. Enough coughing meant no school. Although sometimes we sent them off anyway—risking a call from the school nurse, who only half the time would be convinced by our pleading that it was nothing—so that a few more hours might elapse before the apartment filled with their books and the paper wrappers from their snacks.

But now it was August, and we were at the beach. All winter we dreamed of the house, with its blue floors, the tiny periscope hole in the roof, the red chairs, the rickety porch with its view of the bay. The children turned brown. It was hot. The sea was flat. At low tide, a little pool appeared, and a sandbar, and she, the youngest at three, stood on tiptoe in the water, screeching when an inch-high wave hit. "I think the water's actually cold," she ran to tell us. "No, I think it's actually warm." We sat by the edge in our low beach chairs, the same chairs that used to embarrass us when our parents brought them to the beach. Why do we have so much stuff? we would ask them, eager to be free of it all, of the towels and swimsuits and bottles of juice and fruit, imagining ourselves alone on an empty stretch of beach, naked, with a rucksack. Now we're the ones who unload the car and carry the heaviest bags.

She's so little we let her run naked, even though we have learned that turning brown is bad. We are careless, self-indulgent, to let her do it. By late afternoon, the sun has slipped behind the enormous high dunes, and blue shadows lap at the water. When she comes up from the edge, she is shivering. Her older sisters and brother and their friends are far out in the waves, on their boogie boards and surfboards, unidentifiable in their black wetsuits. We keep track by counting. One, two, three, four, five, six. Is that Anna? We ask each other. Do you see Nick? There's Rose. "Come in now! Come in!" we scream at them, our arms making huge pinwheels so they will pay attention. It is easy for them to pretend they don't see us.

During the night, she coughs on and off, and wakes once. The wind on the bluff pounds the house. In the morning, it is hot and blue again. We get to the beach after lunch, but the sun is still high. From the top of the dune, shielding our eyes, we look for the cluster of bright umbrellas that mark the colony of our friends. They hail us. The older children jump like seals into the waves and swim out to their pals. She stays by the edge. Today, there is another child her age, but she's cranky and won't play. It's too much sun, she didn't sleep, we explain to the other child's parents, chagrined. Secretly, we're annoyed: why won't she just play nicely? The younger children are fooling around with the surfboard, and she wants to try. A wave rears up suddenly, a dragon, foaming at the mouth, she's hurled underwater and onto the sand. Everyone races to help. How can we have allowed this to happen? This is appalling! She is young, much too young for these high jinks. She comes up sputtering. What kind of parents are we? Until someone else makes a mistake, our reputation is shaken.

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Carol Lefelt - A Chronic Fatigue Syndrome Chronicle - Health Rising

At the onset of the illness I was 55 years old, happily married with two wonderful sons in their 30's. Successful in my job as a high school English teacher for 25 years, I was also the Humanities Supervisor and the district's writing guru. I served as K-12 Writing Coordinator and taught Composition, Creative Writing, Advanced Placement Language and Composition, and almost every other course in the English Department.

I advised the high school literary magazine, started a peer-tutor writing center, and attended and often led writing workshops and professional development sessions. I published articles about teaching along with some poetry and a short memoir of my mother-in-law. I also mentored adult writers.

I have been sick with ME/CFS since a flu shot in 1999. After experiences with many, many doctors, I am currently seeing Dr. Ray and Dr. Klimas at the Center for Neuroimmune Disorders at Nova Southeastern University in Florida and taking Immunovir and Atenolol.  My condition has clearly improved since the early years, but I still experience significant relapses and suffer from (sometimes severe) Post-exertional Malaise. In between the relapses, however,  my "well" times are longer and "well-er".

Friday, September 27, 2013

Medicine's Search for Meaning -

Every day, we are reminded that the health care system is in crisis. We are going bankrupt. There are too many lawsuits. We practice defensive medicine. We restrict access. But surveys of doctors indicate a problem that penetrates much deeper than this. Today, almost 50 percent of doctors report symptoms of burnout — emotional exhaustion, low sense of accomplishment, detachment.
Medicine is facing a crisis, but it's not just about money; it's about meaning.
We often think of medicine as a science, and many doctors do come to think of themselves as technicians. But healing involves far more than knowledge and skill. The process by which a doctor helps a patient accept, recover from, adapt to, or endure a serious illness is full of nuance and mystery. I was often moved by how much my father-in-law — an actor who died from a form of leukemia — drew comfort and even inspiration from the relationship he had with his hematologist (who requested a Shakespeare recitation at each visit).
Great doctors don't just diagnose diseases, prescribe medications and treat patients; they bring the full spectrum of their human capabilities to the compassionate care of others. That is why doctors, upon entering the medical profession, speak noble words like the Declaration of Geneva ("I solemnly pledge to consecrate my life to the service of humanity…") or the Oath of Maimonides("May I see in all who suffer only the fellow human being.")

Yet by then, considerable damage has already been done. Nearly half of medical students become burned out during their training. Medical education has been characterized as an abusive and neglectful family system. It places unrealistic expectations on students, keeps them sleep-deprived, overstressed, and in a state of fear of making mistakes, and sends the message that doubts or grief should be kept to oneself. While the training formally espouses the ethics of empathy, compassion and altruism, doctors and researchers say that the socialization process — the "hidden curriculum" — teaches something very different: stay detached, objective, even a little cynical. Five out of six doctors say that medicine is in decline and close to 60 percent would not recommend it as a career for their children (pdf).
As administrative and documentation burdens have exploded in the past three decades, doctors find themselves under pressures to work as quickly as possible. Many have found that what is sacrificed is the very thing that gives meaning to the whole undertaking: the patient-doctor relationship.
"These high levels of distress, depression, loss of satisfaction, fatigue, and burnout have big repercussions for quality of care," explains Dr. Tait Shanafelt, director of the Mayo Clinic Department of Medicine's program on physician well-being. It leads to medical errors, substance abuse, and doctors quitting — something that a country with an aging population and a shortage of doctors can ill afford.
How could we help medicine overcome its own illness?
That's a question that has occupied Dr. Rachel Naomi Remen for decades. Remen is a clinical professor of family and community medicine at the U.C.S.F. School of Medicine and the director of theInstitute for the Study of Health and Wellness, at Commonweal. Over the past 22 years, she has been advancing a powerfully subversive addition to the medical curriculum, a course called The Healer's Art.
For the first six years, Remen taught it with 10 friends, all community physicians drawn from outside the school. She was half afraid that her dean would discover it and throw her out. But gradually, the course began to spread by word of mouth, to two schools, then four, then 16, then 25. It is now taught annually at 71 schools in the United States (half of the nation's medical schools) and schools in seven other countries.
More than 1,600 students take the course each year and about 13,000 have gone through it. And while it is described as a simple elective — a 15-hour course given in five three-hour sessions — many of the doctors who teach it, and the students who take it, see it as part of a movement. In evaluations, large majorities of students say the course fills a gap in their medical education. It helps them to feel more committed to medicine, more supportive of their classmates, more confident that they can be good doctors, and more clear about what they can personally offer patients. More than 95 percent of them say they will recommend it to other students.
"What our students say loud and clear is this course helps to keep their spirits alive as they go through the training," explains Nancy Oriol, dean for students at Harvard Medical School.
Remen's life has been shaped by her own experience living with illness. By her own admission, she has not been well for 60 years. When she was 15, she was diagnosed with Crohn's disease. She underwent nine major surgeries and took large doses of steroids daily for 15 years. "My doctors told me I would be dead by the time I was 40," she says with a laugh. She's now 75 and has been a doctor herself for 50 years.
After medical school, on her first day in training as an intern, a 3-year-old was brought into the emergency room after a car accident. The doctors were unable to save the child's life. Remen accompanied the chief resident as he met with the parents to inform them that their child had died. When they broke down, the sadness was too much. Remen found herself crying, too.
Afterward, the chief resident took Remen aside and said that her behavior had been highly unprofessional.
The message stuck. By the time Remen was senior resident, she hadn't cried for years. That year, another child, a baby, was brought into the hospital after drowning unattended in his bathtub. The doctors were unable to resuscitate the baby. This time, Remen was the one responsible for informing the parents that their only child had died — and as they held each other and fell apart sobbing — she stood silently by in her white coat, maintaining her professional distance. After a while, the baby's father, with tears running down his face, apologized. "'I'm sorry, doctor,' he said. 'I'll get a hold of myself in a minute.'"
How had she become the person a grieving father apologizes to? This is a common outcome of the hidden curriculum.
The Healer's Art is predicated on the idea that medicine is an ancient lineage that draws its strength from its core values: compassion, service, reverence for life and harmlessness. When students and doctors connect to these values in a community, they derive meaning and strength, and can "immunize" themselves against the assaults of the medical curriculum and even the health care system itself.
To help people tap into these deep currents, the course is delivered in an unusual manner. Students and faculty members meet together in small groups in the evenings, participating side by side as equals. There are no experts, no hierarchies, no wrong answers; anyone may speak about his or her experiences or simply listen.
It begins by reminding people that it is not by chance that they are in the room. "We ask: 'How old were you when you first realized that the needs of a living thing mattered to you?'" says Remen. "For most doctors and students, the impulse to respond to the needs of others, plants, animals, insects, and even people, goes back to early childhood, sometimes as far back as they can remember."
Remen recalled a student who told the class that his mother used to bathe him in an old claw-footed bathtub. "At the end of his bath, she would pull out the stopper, reach behind him and get a towel, sit him on her lap and dry him. One day he stepped on the drain and it was sharp — there was pain and blood — and his mother said, 'Never stand on the drain again.' A few weeks or months later, as he was waiting for her to dry him, he noticed the water circling the drain as the tub emptied. He remembered how sharp the drain was and worried that the water was being hurt. After that, when his mother pulled the plug, he would drop his washcloth over the drain to protect the water.
"This is magical thinking. He was probably about 3," said Remen. "Now he is a pediatrician and he brings the same intention to make a difference in pain and suffering to his little patients himself."
Every culture approves and disapproves of different qualities. As the price of admission, medicine implicitly asks its members to leave aspects of themselves behind. The course explores this idea, what Carl Jung called the "shadow."
"Everybody's given a box of crayons and a big piece of paper like in first grade and they are asked to draw a picture of the parts of themselves they feel they can't bring into their work as doctors," explains Joseph O'Donnell, a Senior Advising Dean at the Geisel School of Medicine at Dartmouth, who has taught the course for more than a decade. First-year students do the exercise alongside doctors who have been practicing for decades. "Then everyone holds up their picture. You see 'curiosity,' 'love,' 'compassion,' 'kindness,' 'creativity.' And people say, 'I thought I was the only one experiencing this.' "
The session on grief and loss is among the most powerful, adds O'Donnell. "Students and faculty are asked to become still and quiet," he explained. "They're asked to think back to a time when they experienced a loss, and remember the feelings, and think about what someone may have done that was helpful, or unhelpful."
They write it down. Then the students are asked to say what was helpful. "You hear things like: They held my hand. Gave me a hug. Brought me food. Sat silently and listened." For unhelpful, you hear things like, "They said, 'I'd better leave you alone" or "You'll be fine in no time.'"
When O'Donnell graduated from medical school in 1973, there was no place to discuss such matters openly. "It wasn't safe to say, 'I'm really bothered by what I'm seeing today.' You just took care of it. You read the scientific articles, but you put your heart and soul aside. Here you are allowed to bring those things to the forefront in a valid way with colleagues who are esteemed."
Dean Parmelee, the Associate Dean for Academic Affairs at Wright State University, who has taught the course for several years, recalled an incident shared by a fourth-year student who had been part of a team when a baby was stillborn.
The mother was 16 or 17 years old and she was with her boyfriend, he recalled. There were some psychosocial issues. "After the delivery, the student said, shockingly, everyone just left the operating room," said Parmelee. "He was the only person left and the only sound was the air-conditioning and the ventilation." The mom had started to cry; her baby lay still on her abdomen. The boyfriend was crying, too. The student said nothing. He simply reached out and took the mother's hand and with his other hand he reached out and took the father's hand, closed his eyes and stood there with them for a few minutes crying silently together.
"The student said that if he hadn't taken the course, he would have left the room like everyone else," added Parmelee. "Or he might have said something like, 'You're young, you can have another baby.' "
"Instead," commented Remen, reflecting on the story, "he offered them and himself the healing of a common humanity."
This is not how doctors are accustomed to managing grief and loss. "We intellectualize it, minimize it, become numb to it," O'Donnell said.
There is an enduring belief in medicine that if you feel strongly it will cloud your judgment. But research indicates that emotional attunement can improve critical thinking, decision-making, and the ability to act quickly in crisis moments.
Moreover, we need to feel to connect with other human beings. "If patients see that you care, they can trust you enough to tell you the truth and are more likely to follow your advice," observes Remen. Parmelee, who has been an expert witness in malpractice cases, has found that most cases boil down to physicians "not really listening or making themselves available emotionally for a patient."
And then there is the simple truth that buried feelings don't just go away. "When I took The Healer's Art, the session on grief and loss brought up a whole period in my life that I must have tried hard to not think about," recalled Parmelee. "I was totally unaware of its continuous impact on me, and how much was still there after more than 30 years."
In medical school, students rarely hear their teachers speak this way. Brent Aebi, a third-year medical student at Wright State University, said that hearing veteran doctors speak about their struggles helped him to see a path forward that felt right to him. "I saw that you don't have to become hardened," he said.
The same holds for peers. The combination of hyper-competition and self-doubt in medical school can work against the development of supportive relationships. "This way of listening to others' stories is not present in the normal medical training," observes Rhianon Liu, a third-year medical student at Johns Hopkins School of Medicine. "And it showed me that the most important protective mechanisms are the relationships we build with our classmates and faculty."
Indeed, the importance of listening comes across as one of the course's biggest lessons. "Students comment that they never realized how powerful silence is in communication," said Parmelee.
For O'Donnell, who oversees oncology at the Veterans Administration Hospital in White River Junction, Vt., the course has helped him learn to listen more deeply. "I hear themes I might have missed before," he says. "Not just the symptoms, but the story — how scared the patient is that this ache might mean a recurrence. It brings you back to taking care of people. Because the world isn't made up of atoms. It's made up of stories."
The Healer's Art is an entry point: an attempt to anchor a cultural shift in medicine. Some students who have taken the course have formed groups so they can continue to uncover the meaning of their work after the course ends. They are building an alternative socialization process. The Institute for the Study of Health and Illness also helps doctors, nurses and other health care professionals form groups dedicated to "Finding Meaning in Medicine."
But the course and similar programs need to be given much higher priority if we are going to attack burnout. "Because it has strong links to the quality of care," says Dr. Shanafelt of the Mayo Clinic, "promoting wellness is a shared responsibility of individual physicians as well as the hospital or practice group."
However, if hospital administrators are going to allow doctors to cut back on "productive" activities so they can take time to focus on self-care, he adds, "We'll need to provide hard evidence for people making financial decisions that this is a good investment."
For doctors, this investment could mean the difference between succumbing to burnout and finding ways to practice that deepen their sense of purpose. "When doctors learn to read the affective domain, they are shocked to discover that they have gone right past experiences of profound meaning without seeing them," says Remen. "They say, 'I was colorblind.' Medicine offers you a front-row seat on life. Meaning is all around you. When you can see it, it gives you a sense of gratitude for the opportunity to do this work."
David Bornstein is the author of "How to Change the World," which has been published in 20 languages, and "The Price of a Dream: The Story of the Grameen Bank," and is co-author of "Social Entrepreneurship: What Everyone Needs to Know." He is a co-founder of the Solutions Journalism Network, which supports rigorous reporting about responses to social problems.

HealthBoards Message Boards

Dealing with a medical condition is often difficult. Connecting with others who are going through the same thing can make a world of difference. is where you can make those connections. HealthBoards provides a unique one-stop support group community offering over 200 message boards on various diseases, conditions, and health topics. The HealthBoards community is one of the largest and most dynamic on the Web, with over 10 million monthly visitors, 850,000 registered members, and over 4.5 million messages posted. HealthBoards was rated as one of the top 20 health information websites by Consumer Reports Health WebWatch.

How Not to Die - Jonathan Rauch - The Atlantic

Dr. Angelo Volandes is making a film that he believes will change the way you die. The studio is his living room in Newton, Massachusetts, a suburb of Boston; the control panel is his laptop; the camera crew is a 24-year-old guy named Jake; the star is his wife, Aretha Delight Davis. Volandes, a thickening mesomorph with straight brown hair that is graying at his temples, is wearing a T-shirt and shorts and looks like he belongs at a football game. Davis, a beautiful woman of Guyanese extraction with richly braided hair, is dressed in a white lab coat over a black shirt and stands before a plain gray backdrop.

"Remember: always slow," Volandes says.

"Sure, hon," Davis says, annoyed. She has done this many times.

Volandes claps to sync the sound. "Take one: Goals of Care, Dementia."

You are seeing this video because you are making medical decisions for a person with advanced dementia. Davis intones the words in a calm, uninflected voice. I'll show you a video of a person with advanced dementia. Then you will see images to help you understand the three options for their medical care.

Her narration will be woven into a 10-minute film. The words I'm hearing will accompany footage of an elderly woman in a wheelchair. The woman is coiffed and dressed in her Sunday finest, wearing pearls and makeup for her film appearance, but her face is vacant and her mouth is frozen in the rictus of a permanent O.

This woman lives in a nursing home and has advanced dementia. She's seen here with her daughters. She has the typical features of advanced dementia …

Young in affect and appearance, Volandes, 41, is an assistant professor at Harvard Medical School; Davis, also an M.D., is doing her residency in internal medicine, also at Harvard. When I heard about Volandes's work, I suspected he would be different from other doctors. I was not disappointed. He refuses to let me call him "Dr. Volandes," for example. Formality impedes communication, he tells me, and "there's nothing more essential to being a good doctor than your ability to communicate." More important, he believes that his videos can disrupt the way the medical system handles late-life care, and that the system urgently needs disrupting.

"I think we're probably the most subversive two doctors to the health system that you will meet today," he says, a few hours before his shoot begins. "That has been told to me by other people."

"You sound proud of that," I say.

"I'm proud of that because it's being an agent of change, and the more I see poor health care, or health care being delivered that puts patients and families through—"

"We torture people before they die," Davis interjects, quietly.

Volandes chuckles at my surprise. "Remember, Jon is a reporter," he tells her, not at all unhappy with her comment.

"My father, if he were sitting here, would be saying 'Right on,' " I tell him.

Volandes nods. "Here's the sad reality," he says. "Physicians are good people. They want to do the right things. And yet all of us, behind closed doors, in the cafeteria, say, 'Do you believe what we did to that patient? Do you believe what we put that patient through?' Every single physician has stories. Not one. Lots of stories.

"In the health-care debate, we've heard a lot about useless care, wasteful care, futile care. What we"—Volandes indicates himself and Davis—"have been struggling with is unwanted care. That's far more concerning. That's not avoidable care. That's wrongfulcare. I think that's the most urgent issue facing America today, is people getting medical interventions that, if they were more informed, they would not want. It happens all the time."

Unwanted treatment is American medicine's dark continent. No one knows its extent, and few people want to talk about it. The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.

In 2009, my father was suffering from an advanced and untreatable neurological condition that would soon kill him. (I wrote about his decline in an article for this magazine in April 2010.) Eating, drinking, and walking were all difficult and dangerous for him. He ate, drank, and walked anyway, because doing his best to lead a normal life sustained his morale and slowed his decline. "Use it or lose it," he often said. His strategy broke down calamitously when he agreed to be hospitalized for an MRI test. I can only liken his experience to an alien abduction. He was bundled into a bed, tied to tubes, and banned from walking without help or taking anything by mouth. No one asked him about what he wanted. After a few days, and a test that turned up nothing, he left the hospital no longer able to walk. Some weeks later, he managed to get back on his feet; unfortunately, by then he was only a few weeks from death. The episode had only one positive result. Disgusted and angry after his discharge from the hospital, my father turned to me and said, "I am never going back there." (He never did.)

What should have taken place was what is known in the medical profession as The Conversation. The momentum of medical maximalism should have slowed long enough for a doctor or a social worker to sit down with him and me to explain, patiently and in plain English, his condition and his treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired. Alas, evidence shows that The Conversation happens much less regularly than it should, and that, when it does happen, information is typically presented in a brisk, jargony way that patients and families don't really understand. Many doctors don't make time for The Conversation, or aren't good at conducting it (they're not trained or rewarded for doing so), or worry their patients can't handle it.

This is a problem, because the assumption that doctors know what their patients want turns out to be wrong: when doctors try to predict the goals and preferences of their patients, they are "highly inaccurate," according to one summary of the research, published by Benjamin Moulton and Jaime S. King inThe Journal of Law, Medicine & Ethics. Patients are "routinely asked to make decisions about treatment choices in the face of what can only be described as avoidable ignorance," Moulton and King write. "In the absence of complete information, individuals frequently opt for procedures they would not otherwise choose."

Though no one knows for sure, unwanted treatment seems especially common near the end of life. A few years ago, at age 94, a friend of mine's father was hospitalized with internal bleeding and kidney failure. Instead of facing reality (he died within days), the hospital tried to get authorization to remove his colon and put him on dialysis. Even physicians tell me they have difficulty holding back the kind of mindlessly aggressive treatment that one doctor I spoke with calls "the war on death." Matt Handley, a doctor and an executive with Group Health Cooperative, a big health system in Washington state, described his father-in-law's experience as a "classic example of overmedicalization." There was no Conversation. "He went to the ICU for no medical reason," Handley says. "No one talked to him about the fact that he was going to die, even though outside the room, clinicians, when asked, would say 'Oh, yes, he's dying.' "

"Sometimes you block the near exits, and all you've got left is a far exit, which is not a dignified and comfortable death," Albert Mulley, a physician and the director of the Dartmouth Center for Health Care Delivery Science, told me recently. As we talked, it emerged that he, too, had had to fend off the medical system when his father died at age 93. "Even though I spent my whole career doing this," he said, "when I was trying to assure as good a death as I could for my dad, I found it wasn't easy."

If it is this hard for doctors to navigate their parents' final days, imagine what many ordinary patients and their families face. "It's almost impossible for patients really to be in charge," says Joanne Lynn, a physician and the director of the nonprofit Altarum Center for Elder Care and Advanced Illness in Washington, D.C. "We enforce a kind of learned helplessness, especially in hospitals." I asked her how much unwanted treatment gets administered. She couldn't come up with a figure—no one can—but she said, "It's huge, however you measure it. Especially when people get very, very sick."

Unwanted treatment is a particularly confounding problem because it is not a product of malevolence but a by-product of two strengths of American medical culture: the system's determination to save lives, and its technological virtuosity. Change will need to be consonant with that culture. "You have to be comfortable working at the margins of the power structure within medicine, and particularly within academic medicine," Mulley told me. You need a disrupter, but one who can speak the language of medicine and meet the system on its own terms.

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Fay Vincent: Where the Disabled Aren't Welcome -

Recently I met with the speakers committee of a prominent Manhattan men's club to discuss giving a talk to the members. As we concluded a pleasant lunch, I raised the delicate subject of whether the club had a bathroom I could use in my wheelchair.

I explained that I would need a toilet with bars to permit me to lift myself and a water closet that would permit access in a wheelchair.

My hosts looked at one another and then, with some embarrassment, told me there was no such bathroom in their building. The Americans with Disabilities Act exempts private clubs. They asked for time to consider how to solve the problem. After a few days the club leadership graciously agreed to alter a bathroom to suit the disabled. I hope my little talk proves worthy of their efforts. I am sure others will be grateful for the redone bathroom.

When I arrived at a Florida medical facility for some X-rays, I discovered that my wheelchair was too wide for the office front door. There were some awkward minutes while the poor receptionist scurried about to get me and my chair inside. I had to wonder how a medical office could have been designed to preclude easy entry by a person using a wheelchair.

When I went to see a surgeon at a major orthopedic hospital in New York, I discovered how difficult it is to get into and out of even a proud and caring institution. The turning axis of a wheelchair is quite large and the transition from the waiting room to the X-ray room was replete with tight 90-degree turns. Even well-intentioned legislation cannot specify what is needed to accommodate those of us who are made to feel subhuman by unintentional failures to provide suitable facilities.

I know all the excuses. In one major New York hotel, the bathroom had a tub with a built-in shower. There were bars around the rim of the tub, but it would have been impossible for me to climb into or out of it. The manager told me the hotel had only one true handicap room but the person using it had overstayed one night. The hotel assigned me to what they hoped would be a satisfactory alternative. It wasn't.

I once asked the CEO of one of the major hotel chains why there wasn't more attention paid to the handicapped traveler. His candid reply was instructive. "There are not many people like you visiting the top-level hotels," he explained, "so it does not make business sense to cater to the handicapped."

That surely explains some of what I have experienced. Yet there are small adjustments that would not require either great expense or major alterations.

Enlarge Image

Getty Images
I begin by urging the wide acceptance of toilet facilities with suitable bars and seats about four inches higher than normal. I know the cost of such a bathroom isn't great and the comfort and security such equipment offers the handicapped is enormous.

I'm stunned by the number of doors in offices and other public places that aren't wide enough for my wheelchair—and by the number of door sills that make wheelchair use difficult.

If the doorways were constructed to make it easy for the wheels of my chair to slide over the sills, the awkward occasions when the chair is unable to cross the sill would be avoided.

I'm not looking for sympathy, only better understanding. Modern medicine is keeping us all older for longer. It makes sense to try to ease the way for those of us who cannot walk. Riding in a wheelchair can permit me new vistas but I need some help in some small ways. The big stuff, including ramps and elevators, is done and welcome. I think the little things require little more than some good people paying attention.

Mr. Vincent is a former CEO of Columbia Pictures Industries and commissioner of Major League Baseball.


Easing Doctor Burnout With Mindfulness - Pauline Chen -

According to the nurse's note, the patient had received a clean bill of health from his regular doctor only a few days before, so I was surprised to see his request for a second opinion. He stared intently at my name badge as I walked into the room, then nodded his head at each syllable of my name as I introduced myself.

Shifting his gaze upward to my face, he said, "I'm here, Doc, to make sure I don't have anything serious. I'm not sure my regular doctor was listening to everything I was trying to tell him."

I smiled. To hide my embarrassment.

I had walked into the exam room to listen to this patient; but my mind was a few steps behind, as I struggled with thoughts about the colleague who'd just snapped at me over the phone because she was in no mood to get another new consult, my mounting piles of unfinished paperwork, and the young patient with widespread cancer whom I'd seen earlier in the day. Thoughts about my new patient jumbled in the mix, too, but they came into focus only after I had pushed away the fears that I might have neglected to order a key test on my last patient, that I'd forgotten to call another patient and that I was already running behind schedule.

That relentless inner conversation came to mind this past week when I read two studies on physician burnout and mindfulness in the current issue of The Annals of Family Medicine.

Research over the last few years has revealed that unrelenting job pressures cause two-thirds of fully trained doctors to experience the emotional, mental and physical exhaustion characteristic of burnout. Health care workers who are burned out are at higher risk for substance abuse, lying, cheating and even suicide. They tend to make more errors and lose their sense of empathy for others. And they are more prone to leave clinical practice.

Unfortunately, relatively little is known about treating burnout. Butpromising research points to mindfulness, the ability to be fully present and attentive in the moment, as a possible remedy. A few small studies indicate that mindfulness training courses can help doctors become more focused, more empathetic and less emotionally exhausted.

But two important questions remain unanswered. How does mindfulness affect patients? And who really has the time to enroll in training courses that can take several weeks or longer?

The studies in The Annals of Family Medicine attempt to answer those questions.

In one study, researchers first assessed the baseline mindfulness of 45 doctors, nurses and physician assistants by asking them to respond to statements like, "I tend to walk quickly to where I am going without paying attention to what I experience along the way," "I find myself listening to someone with one ear, doing something else at the same time," and "I forget a person's name almost as soon as I've been told it for the first time." Then the investigators recorded the clinicians' interactions with more than 400 patients and interviewed the patients to gauge their level of satisfaction.

After analyzing the audio recordings and the patients' responses, the researchers found that patients were more satisfied and more open with the more mindful clinicians. They also discovered that more mindful clinicians tended to be more upbeat during patient interactions, more focused on the conversation and more likely to make attempts to strengthen the relationship or ferret out details of the patient's feelings.

The less mindful clinicians, on the other hand, more frequently missed opportunities to be empathic and, in the most extreme cases, failed to pay attention at all, responding, for example, to a patient's description of waking up in the middle of the night crying in pain with a question about a flu shot.

Significantly, the most mindful doctors remained efficient. They accomplished just as much medically for their patients as their least mindful colleagues, despite all the extra conversation with patients about experiences and relationships.

"We clinicians are not always fully present for patients because our minds are always working," said Dr. Mary Catherine Beach, lead author of the study and an associate professor of medicine at Johns Hopkins University. "But when we don't listen," failing to let patients say what they need to say or ask what they need to ask, "we end up giving explanations that are too long and complicated and responses that they don't need or want."

For many doctors, it's not the lack of interest that prevents them from incorporating mindfulness into their clinical practices; it's the time required to complete a standard training course. The courses require a significant commitment, ranging from a full week, to a full day once a week for eight weeks.

In the second study, another group of investigators looked at the effects on 30 physicians of a mindfulness course that required only one weekend and two follow-up evening sessions a couple of weeks apart. Even after such an abbreviated course, the researchers found decreased levels of burnout, anxiety, depression and distress among the doctors. And nearly a year later, those salutary effects persisted, even without any mindfulness training "booster" sessions.

"We tried to get the training down to the bare minimum and as user-friendly as possible," said Dr. Luke Fortney, lead author of the study and an integrative and family medicine physician who is part of the Meriter Medical Group at the McKee Clinic in Madison, Wis. "We didn't want to exhaust the doctors with another burden."

Dr. Fortney and his colleagues filled the condensed course with techniques adapted for busy clinicians, like the "two feet one breath" technique in which a doctor, just before entering an exam room, stands in front of the door and concentrates on breathing and the feeling of his or her feet on the ground as a way to help focus on the moment. They also created a practical and accessible Web site that reinforces key points and offers helpful advice in the form of short videos, brief audio recordings and easy-to-digest tables.

While more work needs to be done, these two studies add to the growing body of research supporting mindfulness training as a way to improve the health of both doctors and their patients. "Mindfulness gives doctors permission to attend to their own health and well-being," Dr. Beach said. "But it also allows doctor to help patients by listening more, talking less, and seeing what the patients need."

Thursday, September 26, 2013

Doctors Brace for Health Law’s Surge of Ailing Patients - Bloomberg

Holy Cross Hospital's health center in Aspen Hill, Maryland, is bracing for more business.

The center treats the uninsured, and has been busy since it opened in 2012 with a waiting list of more than 400 people at its clinic. Now, as a result of the U.S. Affordable Care Act, it's mulling adding staff and hours in anticipation of next year's rush of newly-insured patients, many with chronic medical conditions that have gone untreated for years.

Poorly controlled diabetes can cause stroke, kidney failure and blindness. Undiagnosed cancer can translate into complex end-of-life care, and untreated high blood pressure can lead to heart attacks. In effect, the 2010 health law's biggest promise becomes its most formidable challenge: unprecedented access to care for a needy population when the nation is already grappling with overtaxed emergency rooms and a shortage of physicians.

"When you're getting people that haven't had insurance, they have significant health issues," said Kevin Sexton, president and chief executive officer of Holy Cross Health, in a telephone interview. "A lot of people need these services."

About 25 million Americans are expected to gain coverage under the health law, commonly known as Obamacare. Starting Oct. 1, as many as 7 million uninsured Americans will begin shopping for private plans through government-run exchanges, with many people eligible to have their premiums subsidized by taxpayers. On Jan. 1, Medicaid programs for low-income people will be expanded in about half the U.S. states.

Strained System

The increase in newly insured patients arrives at a time when the nation has 15,230 fewer primary-care doctors than it needs, according to an Aug. 28 assessment by the U.S. Department of Health and Human Services. And emergency rooms report being strained with visits that have risen at twice the rate of population growth.

"It's like we're handing out bus tickets and the bus is already full," said Perry Pugno, vice president for medical education at the American Academy of Family Physicians, by telephone. "The shortfall of primary-care access is not an insignificant problem, and it's going to get worse."

Almost half of all uninsured, non-elderly adults had a chronic condition, based on a 2005 report by the Urban Institute and the University of Maryland. One in six with hypertension reported no visits to health professionals in a year.

Most who come to Holy Cross's health center now lack insurance, and have lived for years with serious ailments, according to Elise Riley, the center's medical director. "It's frustrating to see diseases that could have been prevented," she said in an interview in her office.

More demand may lead to months-long waits to see doctors, delays in finding specialists, and strains on hospitals and outpatient clinics, others said.

Patient Access

Ensuring patient access is critical to the Affordable Care Act's success: if the newly insured swamp the medical system, it could hand critics pushing to derail the law another argument to fray public support. Sara Rosenbaum, a health-law professor at George Washington University in Washington, said she doesn't believe it's going to happen.

"It's going to be a slow ramp up," Rosenbaum said in a telephone interview. "It's not like seven million people will get insurance at once. They're not going to all come racing in the door."

While that number of new patients can be debated, the status of those who do come in the door is not.

Patients who have had gaps in health insurance were more likely to have not gone to a doctor when sick or to have skipped getting prescriptions, according to an April 2013 report by the Commonwealth Fund, a New York-based foundation that works for health-care access. The uninsured were less likely to be up-to-date on recommended cholesterol, blood pressure, colon cancer screenings and mammograms.

Massachusetts Overhaul

Massachusetts pioneered health reform in 2006 when it enacted near universal coverage under then governor Mitt Romney. Community health centers and hospitals that care for a larger share of lower-income residents saw a 12 percent jump in patient volume from 2009 to 2010, with almost 100,000 more visits to safety net hospitals during that time, according to a 2012 report by the Kaiser Family Foundation.

David Longworth, chairman of the Medicine Institute at Ohio's Cleveland Clinic, was working in Massachusetts when the state passed near universal health coverage.

"Practices closed and patients would wait for eight to nine months to get in," Longworth said by telephone. "We overwhelmed the primary care health system."

In cities such as Lawrence, Massachusetts, a former textile city that has long been home to a large immigrant community, doctors have coped with rising volume.

Patient Surplus

The Lawrence Family Medicine Residency, which provides primary care and other medical services to a largely low-income patient population, saw an uptick in patients, said Joseph Gravel, chief medical officer and residency program director.

"When you look at the experience in Massachusetts, it's going to be bumpy" when Obamacare rolls out, Gravel said in a telephone interview.

The percentage of family doctors in the state accepting new patients has dropped 19 percent in the past seven years and the percentage of internists accepting new patients has fallen 21 percent over nine years, according to a July report by the Massachusetts Medical Society, an advocacy group for patients and physicians. Only about half of family doctors were accepting new patients this year.

The Cleveland Clinic predicts as many as 90,000 new patients in northeast Ohio if everyone signs up for coverage. The health system is working to ramp up its primary care practices in anticipation.

Exciting Challenge

At Grady Health System in Atlanta, more patients are expected, especially at its six outpatient centers. San Francisco General Hospital and Trauma Center in California has some expanded hours its 19 primary care centers. The centers are located in the hospital and out in the community.

"We anticipate an increase in primary care and specialty," Chief Executive Officer Sue Currin said.

On a recent Friday morning at the Holy Cross clinic in Aspen Hill, Riley donned a white coat and prepared to see patients. While there may be more patients under reform, Riley said an increase in business will be welcome.

"I've very excited," Riley said. "I've been dealing with uninsured patients for a long time. If they get coverage, we can prevent a lot of problems."