Saturday, June 4, 2011
At night, Ian Brown's 8-year-old son, Walker, grunts as he repeatedly punches himself in the head and ears.
His face is distorted, with an over-large brow, sloping eyes and a thick lower lip. He cannot speak. He cannot eat solid food, and takes in formula through a tube from a feedbag powered by a pump. The tube runs through a hole in his sleeper into a valve in his belly. When Walker's own punches begin to awaken him, his father must disconnect the tube and lift the 45-pound boy out of his crib, carry him down three flights of stairs and try to coax him back to sleep. He also must change Walker's ballooning diaper, as the boy is not toilet trained, and prevent him from smearing excrement every where. He then feeds him a bottle and tiny doses of Pablum. The kitchen is covered with the film of Pablum dust. Brown's tasks are performed as quietly as possible so as not to disturb his wife, Johanna, and Walker's older sister, Hayley. In the first eight years of Walker's life, neither parent slept two uninterrupted nights in a row.
Brown begins "The Boy in the Moon" this unsparing way because he wants to fling us into his story, alongside him and his family, and because as a writer he knows that an account of the plain facts will bring us to our knees more efficiently than a dressed-up version. Walker (the sad irony of the name) was born with cardiofaciocutaneous syndrome (CFC), a genetic mutation so rare that just over 100 cases have been reported worldwide. Over the course of this book, the truth that Brown learns from his son is also rare — that the life that appears to destroy you is the one you long to embrace. Whatever is human is disabled. Walker is unable to stop bashing himself, and his father is unable to understand him. The boy is likened to the man in the moon, whose face we see though we know it is not there. The face is revealed by our believing in it. As Brown searches for his son's mind, he finds his own.
He proceeds by leading us through a series of questions and quests regarding the science of Walker's condition, and the boy's future. Will he change, improve? Can he be taught? Should he be institutionalized? No one would have blamed the Browns if they had placed Walker in an institution from the start. Mother and father put the question to themselves, and their answer is the same: "No, no, not now. Later." The reason for the delay is love. Walker brings a strange, sweet love to his family, not because he exhibits love himself, but rather because he elicits their capacity for it.
Along the way, the parents despair, quarrel, blame themselves for Walker's lack of progress, fall into dark silences. There are money worries. Walker's formula alone costs $12,000 a year. Husband and wife have no privacy. They pay less attention to each other than to Walker. They learn to live with him as a sideshow attraction in public. The perceived normalities of other families insult and assault them. In his investigations Brown discovers that had Walker been conceived today, a test administered at 10 weeks of pregnancy might have been available to detect abnormalities. Johanna says she would have had an abortion. Brown says, "But then you wouldn't have had Walker." Johanna counters that a fetus would not have been the Walker they know now. Brown speculates about what the world would be like without imperfect people like Walker. What we take from such exchanges is how lovely the couple are in their candor. One cannot help wondering if, in his formless, undemonstrative way, Walker created them.
Brown's scientific pursuit is largely fruitless. He meets other parents with CFC children, but they offer only a passing communal solace. Too little is known of Walker's condition. Brown rejects the idea of his son's life "reduced to a typing error in a three-billion-long chain of letters." Life is more complicated than a genome. He learns more from his travels in France, and in Canada, his home country, where he consults those who have given their lives to both aiding and learning from the disabled. People like the researcher Gilles Le Cardinal and Jean Vanier, who has created networks of support groups and communities for the afflicted, teach him much about Walker's hidden mind. The 82-year-old Vanier, who founded L'Arche (after Noah's ark), an international organization of communities for the intellectually disabled, believes that the severely disabled challenge us by their existence. They implicitly ask, "Do you consider me human?" They suggest how arduous it is to be human. They remind us of death.
Brown's research appears to give both father and son a raison d'être. As a journalist — a feature writer for The Globe and Mail — Brown knows the satisfaction of learning a foreign subject and writing about it with newfound authority. The difference here is that most of the time journalists treat learning as a buffet at which they taste and move along. The story Brown is working on is the justification of his and Walker's life. Yet he maintains the reporter's tone of cool inquiry, even as he delves into matters of the spirit, which gives his learning process the feel of a reasoned capitulation. Brown does not seem born to spiritual thoughts. When he expresses them, they sound all the more persuasive, as one feels the pull of his natural resistance.
Walker is nearly 13 when Brown's story ends, and he has changed a little. He is drawn to the sound of a human voice, even though he cannot produce one himself. It is said that babies learn language in order to tell the stories already in them. Walker cannot tell the stories inside him, but his inability may be his story, the one told in silence, of frustration and gratitude. If he knows anything, it is that he needs. He may even intuit that he is needed. When inevitably the Browns place Walker in a group assisted-living home, a white bungalow on the edge of town, it allows him what the family never imaged for him — a life of his own.
Standing back, Brown contemplates the mystery of his son, which contains other mysteries — for instance, do people like Walker improve evolution by testing our sympathetic capacities, thus moving us toward a survival of the weakest? "What if Walker's life is a work of art in progress?" he asks. "Would that persuade you to take care of him for me?" The hurling of this gauntlet is what we have been thinking (dreading) all along. The Browns live in "an underworld of Walker's making." Of course they do. Yet who does not live in a world of someone else's making? The trick lies in the attitude one brings to the inevitably compromised life. In a way, the containment that Walker forces upon his family offers an invitation to become creative within strict limits. Richard Wilbur said the strength of the genie comes from its living in a bottle. As relentlessly difficult and sorrowful as is the life that Walker shapes, it also insists on something beautiful in reaction to it. Thus Brown's book.
But still. To be sure, Walker has made the Browns greater people. He has alerted them to the value of living in the here and now. He has helped to enlarge their ethical nature. He has made them aware that in most important things — war, love, death — we are as helpless as Walker. Nonetheless, for all that and then some, would we assume the care and feeding of Walker Brown? The father's challenge is insincere. He would not trade his life for any of ours.
A wonder occurs on Page 50 of this book. The reader has been immersed in the endless pain of living with Walker. Suddenly there is a photograph of him and his father as they loll in a chaise. And Walker looks very much like an ordinary child. There is something slightly off about the eyes, but no more than that. After our imagining a heartbreaking monster, we see instead that Walker is close to us. He is the underdeveloped us, the unreachable us of whom we are always dimly aware. The image shepherds us through the rest of the book even after we are shown other, clearer photos of the boy's malformations — Ian reading a newspaper, Walker leaning back in his arms, and the two of them at peace.
Friday, June 3, 2011
Antibiotics for sore throats and CT scans for minor head injuries in children are among the most wasteful practices in primary care medicine, a national physicians' group said last week. Among the others are electrocardiograms performed routinely on healthy adults and widespread prescribing of brand-name statins to reduce L.D.L., or "bad" cholesterol.
The group issuing the report, the National Physicians Alliance, an organization of some 22,000 physicians, developed three separate "Top 5" lists for primary care doctors — internists, family doctors and pediatricians — that were essentially lists of medical "don'ts." The lists were published online in The Archives of Internal Medicine.
The authors urged doctors not to perform bone-density scans on women younger than 65 and men younger than 70 who have no risk factors for osteoporosis. The researchers also urged physicians to forgo basic blood screening in healthy adults (though screening for cholesterol was recommended, as was diabetes screening in some cases).
"Doctors are inundated with 'do this' and 'do that.' We wanted to focus on what doctors should not do," said Dr. Stephen Smith, professor emeritus of family medicine at the Warren Alpert Medical School at Brown University, who led the initiative. "We wanted to come up with the top things that primary care physicians can do that would enhance quality, but also reflect the idea of being good stewards of finite medical resources, save money and reduce harms and risks."
We spend a lot of time talking and, indeed, yelling at each other, over how we are going to pay for health care and who is going to buy what. What gets scant attention is the far more important question: What are we going to create and who is going to sell it?
Imagine for a moment that the price of health care suddenly dropped by 90 percent. Care that cost $1,000 could be had for $100. Not only that, but the cost curve began to bend the other way. The next year the care was $95. The year after that it was $90.
In that world, would it matter whether we had RyanCare or ObamaCare? Would it matter if most people had health insurance at all?
Such a world could only be achieved by changes on the supply side. Health care would have to become cheaper to produce. Indeed, health care stands in stark contrast to a portion of our economy that displays that property: information and communication technology.
This is striking, because health care essentially is information and communication technology. To get a glimpse of this, imagine the Universal Health App (UnHA) that comes with your next-, next-generation Android or iPhone. You point your phone at yourself and UnHA immediately tells you what diseases you have. If medication is available, she orders it. If a surgical procedure is needed, she schedules it. She knows your calendar perfectly and can interface seamlessly with the local hospital's scheduling computer and the surgeon's calendar.
When the drugs come, UnHA checks to make sure you have the right ones, reminds you when to take them, lets you know what to do if you miss a dose and monitors you for side effects. When you come home from your surgery, UnHA likewise monitors your recovery, making sure that everything is proceeding according to plan.
UnHA is personalized and travels with you everywhere you go. She carries all of your medical records and calculates your risk factors for every imaginable condition on a continuous basis. UnHA will even remind you of the expected increase in your individualized life expectancy from staying on the elliptical for 20 more minutes.
Perhaps most important is UnHA's back end. UnHA's server strips away all identifying information and runs constant statistical analysis on incoming data from a billion patients worldwide. When a news story generates a spike in blood pressures, UnHA's server side can see the wave of tension traveling across the globe.
When more heart attacks come in within the next two hours, UnHA can trace them back to the exogenous event and calculate the effect stressors on the probability of a heart attack. In this way UnHA not only monitors patients but conducts continual scientific analysis. She picks up drug interactions and other effects that would have otherwise been too slight to notice.
Now, this isn't meant to suggest that UnHA is coming soon to a phone near you. It's to point out that health care is fundamentally an information and communication industry, yet it isn't following the trend of collapsing costs.
The key question is why?
My baseline answer is that the current health-care system is riddled with regulation, litigation and occupational and pharmaceutical licensing. We have levels heaped upon levels of protection against bad drugs, bad doctors and bad health-care consumers. While all of these rules provide us with a sense of security, they most likely undermine the evolution of health care and make what care we do have outrageously expensive.
We've come to accept rising health-care costs as a fact of life. The CBO projects them going out to 2080. Yet, health care is an information and communication technology industry. It could be enjoying collapsing costs, if only we would set it free.
Karl Smith is an assistant professor of economics and government at the University of North Carolina School of Government and a blogger at ModeledBehavior.com.
Tuesday, May 31, 2011
Monday, May 30, 2011
Tom Kerr of
She phoned her son, more than 100 miles away, because no one in the hospital was answering her call button.
Mr. Kerr quickly called the hospital operator, tracked down the floor nurse and asked for someone to check on his mother.
"She had to call me long distance, and then I had to call the hospital long distance," he recalled recently. "I complained to the hospital about the lack of a response to her call button and received an apology. There was obviously no defense."
Whether it's a request for ice water, help getting to the bathroom or a plea for pain relief, an unanswered call light leaves hospital patients feeling helpless and frustrated. And for nurses, often the first responders to these calls, the situation is frustrating too: Short staffing and a heavy workload often make it impossible to respond as quickly as they would like.
Presbyterian Healthcare Services, which operates three hospitals in
The company discovered that requests could be handled far more efficiently if call-button calls were sent to a central operator.
That operator can summon support workers via text message to take care of simple requests, like pillows or help with the television remote, freeing nurses to deal with bigger problems like pain relief or tangled IV lines. The hospitals now use the system in 13 units with a total of 400 beds, with plans to expand it further.
"We've really fundamentally changed the way we interact with our patients around their needs," said Lauren Cates, the hospitals' chief operating officer. "If you press a call light you have no idea if anyone is listening. Now we interact with the patient much more quickly."
In national patient satisfaction surveys, Presbyterian has moved from the 40th percentile in call response promptness to the 75th percentile. And the company says it has seen a 92 percent reduction in patient complaints about lack of communication.
Moreover, of the 1,400 patient calls the system receives each day, about 10 percent are mistakes, caused by rolling over on the button or mistaking it for the television remote.
"Think about how much wasted time, with 140 errors a day, for our nurses who had to drop what they were doing and respond," Ms. Cates said. "It's made a real difference in the productivity of our staff."
In one case, a patient gasping for air hit the call button, which the operator answered in a matter of seconds. When the operator heard the patient's distress, she alerted an emergency response team, which rushed to the bed and performed
"The call bell is the patient's lifeline," said Jeanne DeMarzo, clinical director of nursing. "We need to act quickly and promptly to respond to the patient's concern."
As the Albuquerque system found, many call-light requests can be handled by nonmedical staff. When the patient has a medical need, the responder immediately tracks down a qualified employee to take care of it.
In addition, under a "rounding" program, a nurse, administrator or hospital aide must stop by each patient's room once an hour, regardless of whether the call light is on. "Rounding proactively to address patient needs helps avoid use of the call bell," said Joanne Ritter-Teitel, vice president and chief nurse executive.
Even doctors sometimes answer patient calls. "Bedpans are certainly one of the things I would happily reach for if a patient needed one," said Dr. William Southern, chief of hospital medicine at Montefiore. "Call bells are something that me and my entire staff think it's important to answer. It's extraordinarily important to patients and their families."
For patients, changes like these can't come soon enough.
Walter Rhett, 59, of
When Liz Farrar, 30, of
"After the first night, every nurse and doctor were very helpful," said Ms. Farrar, whose son has fully recovered. "But it makes my temperature rise just thinking about the first night.
With Republicans in complete control of Maine's state government for the first time since 1962, State Senator Lois A. Snowe-Mello offered a bill in February to limit doctors' liability that she was sure the powerful doctors' lobby would cheer. Instead, it asked her to shelve the measure.
"It was like a slap in the face," said Ms. Snowe-Mello, who describes herself as a conservative Republican. "The doctors in this state are increasingly going left."
Doctors were once overwhelmingly male and usually owned their own practices. They generally favored lower taxes and regularly fought lawyers to restrict patient lawsuits. Ronald Reagan came to national political prominence in part by railing against "socialized medicine" on doctors' behalf.
But doctors are changing. They are abandoning their own practices and taking salaried jobs in hospitals, particularly in the North, but increasingly in the South as well. Half of all younger doctors are women, and that share is likely to grow.
There are no national surveys that track doctors' political leanings, but as more doctors move from business owner to shift worker, their historic alliance with the Republican Party is weakening from Maine as well as South Dakota, Arizona and Oregon, according to doctors' advocates in those and other states.
That change could have a profound effect on the nation's health care debate. Indeed, after opposing almost every major health overhaul proposal for nearly a century, the American Medical Association supported President Obama's legislation last year because the new law would provide health insurance to the vast majority of the nation's uninsured, improve competition and choice in insurance, and promote prevention and wellness, the group said.
Because so many doctors are no longer in business for themselves, many of the issues that were once priorities for doctors' groups, like insurance reimbursement, have been displaced by public health and safety concerns, including mandatory seat belt use and chemicals in baby products.
Even the issue of liability, while still important to the A.M.A. and many of its state affiliates, is losing some of its unifying power because malpractice insurance is generally provided when doctors join hospital staffs.
"It was a comfortable fit 30 years ago representing physicians and being an active Republican," said Gordon H. Smith, executive vice president of the Maine Medical Association. "The fit is considerably less comfortable today."
Mr. Smith, 59, should know. The child of a prominent Republican family, he canvassed for Barry Goldwater in 1964, led the state's Youth for Nixon and College Republicans chapters, served on the Republican National Committee and proudly called himself a Reagan Republican — one reason he got the job in 1979 representing the state's doctors' group.
But doctors in Maine have abandoned the ownership of practices en masse, and their politics and points of view have shifted dramatically. The Maine doctors' group once opposed health insurance mandates because they increase costs to employers, but it now supports them, despite Republican opposition, because they help patients.
Three years ago, Mr. Smith found himself leading an effort to preserve a beverage tax — a position anathema to his old allies at the Maine State Chamber of Commerce and the Republican Party but supported by doctors because it paid for a health program. The doctors lost by a wide margin, and the tax was overturned.
Mr. Smith still goes to the State Capitol wearing gray suits, black wingtips and a gold name badge, but he increasingly finds himself among allies far more casually dressed, including the liberalMaine People's Alliance and labor groups. And while he still greets old Republican friends — he is a lobbyist, after all — he spends much of his time strategizing with Democrats.
Representative Sharon Anglin Treat, a powerful Democrat who was first elected in 1990, said that she and Mr. Smith were once bitter foes. "But Gordon's become like a consumer activist," she said with a big smile. "I've seen him more times in the last few years than I can count."
Dr. Nancy Cummings, a 51-year-old orthopedic surgeon in Farmington, is the kind of doctor who has changed Mr. Smith's life. She trained at Harvard, but after her first son was born she began rethinking 18-hour workdays. "My husband used to drive my son to the hospital so that I could nurse him," she said. "I decided that I really wanted to be a good surgeon, but also wanted to raise healthy, well-adjusted kids I would actually see."
So she went to work for a hospital, sees health care as a universal right and believes profit-making businesses should have no role in either insuring people or providing their care. She said she was involved with the Maine Medical Association, for the most part, to increase patients' access to care.
Dr. Lee Thibodeau, 59, a neurosurgeon from Portland, still calls himself a conservative but says he has changed, too. He used to pay nearly $85,000 a year for malpractice insurance and was among the most politically active doctors in the state on the issue of liability. Then, in 2006, he sold his practice, took a job with a local health care system, stopped paying the insurance premiums and ended his advocacy on the issue.
"It's not my priority anymore," Dr. Thibodeau said. "I think Gordon and I are now fighting for all of the same things, and that's to optimize the patient experience."
Many of Mr. Smith's counterparts in other states told similar stories of change.
"When I came here, it was an old boys' club of conservative Republicans," said Joanne K. Bryson, the executive director of the Oregon Medical Association since 2004.
Now her group lobbies for public health issues that it long ignored, like insurance coverage for people with disabilities.
Even in Texas, where three-quarters of doctors said last year that they opposed the new health law, doctors who did not have their own practices were twice as likely as those who owned a practice to support the overhaul, as were female doctors.
Dr. Cecil B. Wilson, the president of the A.M.A., said that changes in doctors' practice-ownership status do not necessarily lead to changes in their politics. And some leaders of state medical associations predicted that the changes would be fleeting.
Dr. Kevin S. Flanigan, a former president of the Maine Medical Association, described himself as "very conservative" and said he was fighting to bring the group "back to where I think it belongs." Dr. Flanigan was recently forced to close his own practice, and he now works for a company with hundreds of urgent-care centers. He said that in his experience, conservatives prefer owning their own businesses.
"People who are conservative by nature are not going to go into the profession," he said, "because medicine is not about running your own shop anymore."
But for many, these threats are not an inevitable part of aging. They are caused by falls, an entirely preventable problem that leads to a vast array of serious injuries and the onset of debilitating illnesses that rob seniors of their independence, mobility, and in many cases, their lives.
"It's just a huge health burden," said Vicky Scott, clinical associate professor at the University of British Columbia and senior adviser on fall and injury prevention for the B. C. government. "[Falls are] that trigger event that seems to really spiral [the health of seniors] downward."
In Canada, the issue of seniors falling isn't unrecognized. Leading Canadian researchers have helped bring attention to the problem, and now many parts of the country have fall prevention programs for homes, hospitals, residential-care facilities and other centres.
But experts say the implementation, enforcement and scope of these programs are often lacking and there is not enough pressure on health-care facilities or home-care programs to prioritize fall-prevention strategies.
At the same time, such programs don't account for the fact that thousands of seniors living independently aren't aware of the risks they face and never have a discussion about it with their physician.
These glaring gaps lead to countless injuries, unnecessary deaths and a major strain on the health-care system – and a growing number of experts in the field say things need to change.
"It's common, it's preventable and the prevention for this will protect from other diseases as well," said Karim Kahn, leader of fracture prevention at the Centre for Hip Health and Mobility, a Vancouver-based research institute focused on arthritis and hip-related fractures.
Studies show that one in three people 65 and older, and perhaps more, will fall at least once a year.
Not all falls lead to serious injury. But falls cause more than 90 per cent of all hip fractures in seniors. One in five seniors who fractures a hip will die within a year of the break.