Saturday, April 2, 2011

Weighing the merits of ‘never-say-die’ oncology

Konrad Fassbender remembers clearly the airport waiting-room conversation he had with a grieving colleague, whose adult daughter had just died of breast cancer. The father lamented their final hours together were tainted by the medical team's vigorous attempts to keep the woman alive.

"He said, 'Those buggers were poking and prodding her with needles the day before she died," recalled Prof. Fassbender, a health economist at the University of Alberta. "He was very bitter about that."

A growing body of thought suggests such assertive treatment is, in fact, often inappropriate for patients facing imminent death from cancer or other terminal diseases. A new Ontario study reveals, however, that cancer patients are increasingly undergoing emergency-department treatment, chemotherapy and other "aggressive" care in the last few weeks of their lives.

Close to one in four patients studied received potentially aggressive care in their last month, it found. Care of all kinds in the last months of life generally costs the health-care system billions of dollars a year, other research has suggested.

The oncologist who led the Ontario study, Dr. Craig Earle of Toronto's Sunnybrook Health Sciences Centre, said hospice beds and palliative services in patients' homes are often not available. He and other experts advocate new government spending on palliative care, designed to lessen pain and discomfort and address psychological and spiritual issues for patients whose illness can no longer be treated.

Resources are not the only issue, though. Experts say attitudes within medicine and in society as a whole still tend to swing toward heroic attempts to extend life, rather than easing certain patients more peacefully toward an inevitable death.

"It's human nature. We root for the underdog. We like to gamble. We buy lottery tickets even though the probability of winning is small," said Prof. Fassbender, whose research focuses on end-of-life care and its costs. "Similiarly, when cancer patients are confronted with treatment, even if the probability of success is low, they still may opt for it, because that correlates with hope ... But it may be false hope."

Dr. Larry Librach, a palliative-care physician at Toronto's Mount Sinai Hospital, said the culture is embodied by an old joke among physicians: "Why do they put nails in coffins? ... To prevent the oncologists giving them any more chemo."

Younger cancer doctors are becoming increasingly attuned to palliative care and cancer centres are beginning to include such treatment among their services, he said, but the old mentality persists in some corners.

"I know a couple of oncologists who have never accepted the idea of palliative care," said Dr. Librach, a spokesman for the Canadian Hospice and Palliative Care Association. "They're never-say-die oncologists. There's always something more [they can do]."

Caring for someone at the end of their life consumes a huge portion of the medical system's efforts and budget. A 2004 Manitoba study suggested 21% of health-care spending - which would amount to about $28 billion nationally - is spent on treating people in their final six months.

The study by Dr. Earle and colleagues, just published in the Journal of Clinical Oncology, analysed data on 227,000 Ontarians who died from cancer between 1993 and 2004. The researchers looked at whether they received potentially aggressive care, defined as chemotherapy within 15 days of death and more than one emergency-department visit, at least one ICU admission or one hospitalization within 30 days of the end.

They found close to one in four had received such treatment, and the numbers had crept up by an average of 1% in each of the 10 years. That has not reached U.S. levels, and some of the treatment may have been reasonable in the circumstances, without the hindsight of knowing when the patient would die, said Dr. Earle, who worked 10 years in the States.

Still, he said it underlines the need for expanded hospice services, an area where the American system actually performs better.

People have the right to decide on their treatment, but physicians often do not give them the whole story, said Dr. Librach, a spokesman for the Canadian Hospice Palliative Care Association. That means letting patients know exactly how long a particular drug or round of chemotherapy will extend their lives, what side effects that treatment will bring and the alternative benefits of palliative care, he said.

While medical advances have turned many cancers into chronic, survivable diseases, half of the people diagnosed with cancer still die from it.

"One thing I often say to patients is 'If you get another month of life, what are you going to do with it? Other than feel sick from chemo.' "

Prof. Fassbender offered a wish list of measures to enhance end-of-life treatment: better education of medical students about palliative care; boosting fees for family doctors to encourage them to visit dying patients at home; funding hospice beds and providing more palliative care in hospitals.

One-time funding set aside in the Conservative government's recent budget for palliative care was a promising sign, though it amounted to just $10 per dying patient, he said.

High-End Medical Option Prompts Medicare Worries -

Every year, thousands of people make a deal with their doctor: I'll pay you a fixed annual fee, whether or not I need your services, and in return you'll see me the day I call, remember who I am and what ails me, and give me your undivided attention.

But this arrangement potentially poses a big threat to Medicare and to the new world of medical care envisioned under President Barack Obama's health overhaul.

The spread of "concierge medicine," where doctors limit their practice to patients who pay a fee of about $1,500 a year, could drive a wedge among the insured. Eventually, people unable to afford the retainer might find themselves stuck on a lower tier, facing less time with doctors and longer waits.

Medicare recipients, who account for a big share of patients in doctors' offices, are the most vulnerable. The program's financial troubles are causing doctors to reassess their participation. But the impact could be broader because primary care doctors are in short supply and the health law will bring in more than 30 million newly insured patients.

If concierge medicine goes beyond just a thriving niche, it could lead to a kind of insurance caste system.

"What we are looking at is the prospect of a more explicitly tiered system where people with money have a different kind of insurance relationship than most of the middle class, and where Medicare is no longer as universal as we would like it to be," said John Rother, policy director for AARP.

Concierge doctors say they're not out to exclude anyone, but are trying to recapture the personal connection shredded by modern medicine. Instead of juggling 2,000 or more patients, they can concentrate on a few hundred, stressing prevention and acting as advocates with specialists and hospitals.

"I don't have to be looking at patient mix and how many are booked per hour," said Dr. Lewis Weiner, a primary care physician in Providence, R.I., who's been in a concierge practice since 2005.

"I get to know the individual," Weiner said. "I see their color. I see their moods. I pick up changes in their lives, new stressors that I would not have found as easily before. It's been a very positive shift."

Making the switch can also be economically rewarding. If 500 patients pay $1,500 apiece, that's gross revenue of $750,000 for the practice. Many concierge doctors also bill Medicare and private insurance for services not covered by their retainer.

Patients and family members say the fee is worth it.

Linda Popkin lives in New York, far from her 97-year-old mother in Florida. With their mother in a concierge practice, Popkin says she and her siblings have direct access to the doctor as needed.

"If one of us calls the doctor, he calls us back," she said. "We are involved in all the decisions. We definitely have peace of mind that Mom is seeing a doctor she can speak to if we have any questions. I'm sure you've heard the horror stories about people calling the doctor and they can't get in for three weeks."

Popkin's mother didn't lose her Medicare. She's still covered for medications, specialist visits, hospitalizations and other services. But she has an additional level of personalized attention.

Her doctor is affiliated with a Florida-based management company called MDVIP, a wholly owned subsidiary of consumer products giant Procter & Gamble that represents the largest group of concierge physicians in the country.

MDVIP marketing executive Mark Murrison says its doctors do not sell access, but a level of clinical services above what Medicare or private insurance cover. The cornerstone is an intensive annual physical focused on prevention. About half the patients are Medicare beneficiaries.

Retainer fees range from $1,500 to $1,800 a year, and MDVIP collects $500 of that for legal, regulatory and other support services.

Murrison said the fee is affordable for middle-class households when compared with the cost of many consumer goods and services. "One of our goals is to democratize concierge medicine," he said.

For now, there may be fewer than 2,000 doctors in all types of retainer practice nationally. Most are primary care physicians, a sliver of the estimated 300,000 generalists.

The trend caught the eye of MedPAC, a commission created by Congress that advises lawmakers on Medicare and watches for problems with access. It hired consultants to investigate.

Their report, delivered last fall, found listings for 756 concierge doctors nationally, a five-fold increase from the number identified in a 2005 survey by the Government Accountability Office.

The transcript of a meeting last September at which the report was discussed reveals concerns among commission members that Medicare beneficiaries could face sharply reduced access if the trend accelerates.

"My worst fear — and I don't know how realistic it is — is that this is a harbinger of our approaching a tipping point," said MedPAC chairman Glenn Hackbarth, noting that "there's too much money" for doctors to pass up.

Hackbarth continued: "The nightmare I have — and, again, I don't know how realistic it is — is that a couple of these things come together, and you could have a quite dramatic erosion in access in a very short time."

Another commissioner at the meeting, Robert Berenson, called concierge medicine a "canary in the coal mine."

Several members said it appears to be fulfilling a central goal of Obama's overhaul, enhancing the role of primary care and restoring the doctor-patient relationship.

Yet the approach envisioned under the law is different from the one-on-one attention in concierge medicine. It calls for a team strategy where the doctor is helped by nurses and physician assistants, who handle much of the contact with patients.

John Goodman, a conservative health policy expert, predicts the health care law will drive more patients to try concierge medicine. "Seniors who can pay for it will go outside the system," he said.

MedPAC's Hackbarth declined to be interviewed. But Berenson, a physician and policy expert, said "the fact that excellent doctors are doing this suggests we've got a problem."

"The lesson is, if we don't attend to what is now a relatively small phenomenon, it's going to blow up," he added.

When a primary care doctor switches to concierge practice, it means several hundred Medicare beneficiaries must find another provider.

Medicare declined an interview on potential consequences. "There are no policy changes in the works at this time," said spokeswoman Ellen Griffith.



More Physicians Say No to Endless Workdays -

Even as a girl, Dr. Kate Dewar seemed destined to inherit the small-town medical practice of her grandfather and father. At 4, she could explain how to insert a pulmonary catheter. At 12, she could suture a gash. And when she entered medical school, she and her father talked eagerly about practicing together.

But when she finishes residency this summer, Dr. Dewar, 31, will not be going home. Instead, she will take a job as a salaried emergency room doctor at a hospital in Elmira, N.Y., two hours away. An important reason is that she prefers the fast pace and interesting puzzles of emergency medicine, but another reason is that on Feb. 7 she gave birth to twins, and she cannot imagine raising them while working as hard as her father did.

"My father tried really hard to get home, but work always got in the way," Dr. Dewar said. "Even on Christmas morning, we would have to wait to open our presents until Dad was done rounding at the hospital."

Dr. Dewar's change of heart demonstrates the significant changes in American medicine that are transforming the way patients get care.

For decades, medicine has been dominated by fiercely independent doctors who owned their practices, worked night and day, had comfortable incomes and rarely saw their families.

But with two babies, Dr. Dewar wants a life different from her father's and grandfather's. So instead of being an entrepreneur, she will become an employee of a large corporation working 36 hours a week — half the hours her father and grandfather worked.

Indeed, emergency room and critical-care doctors work fewer hours than any other specialty, according to a 2008 report from the federal Department of Health and Human Services.

Her decision is part of a sweeping cultural overhaul of medicine's traditional ethos that along with wrenching changes in its economics is transforming the profession. Like Dr. Dewar, many other young doctors are taking salaried jobs, working fewer hours, often going part time and even choosing specialties based on family reasons. The beepers and cellphones that once leashed doctors to their patients and practices on nights, weekends and holidays are being abandoned. Metaphorically, medicine has gone from being an individual to a team sport.

For doctors, the changes mean more control of their personal lives but less of their professional ones; for patients, care that is less personal but, as studies have shown, more proficient.

Older doctors view these changes with considerable ambivalence, among them Dr. Dewar's 90-year-old grandfather and 61-year-old father, although both supported Dr. Kate Dewar's decisions and were thrilled about the birth of her twins.

"My son and I had deeper feelings for our patients than I think Kate will ever have," Dr. William Dewar II said over lunch at a diner in Honesdale, about 30 miles northeast of Scranton. Munching on a club sandwich, Dr. William Dewar III gestured toward the diner's owner, who had greeted them deferentially.

"I've had three generations of his family under my care," he said as a waitress brought his usual Diet Coke without being asked. "Kate will never have that."

In a separate interview, Dr. Kate Dewar said that treating chronic conditions like diabetes and high cholesterol — a huge part of her father's daily life — was not that interesting. She likened primary care to the movie "Groundhog Day," in which the same boring problems recur endlessly. Needing constant stimulus — she e-mails while watching TV — she realized she could not practice the medicine of her forebears.

"I like it when people get better, but I'd rather it happen right in front of my eyes and not years later," she said. "I like to fix stuff and then move on."

Her attitude is part of a gradual distancing between doctors and patients. Doctors were once revered, but a host of intermediaries — insurers, lawyers, the Internet, growing patient needs and expectations — have intervened, to the point that many patients now see doctors as interchangeable. Younger doctors are deciding that the personal price of being at their patients' beck and call is too high, while acknowledging that teams of doctors can offer a higher quality of care. So they are embracing corporate, less entrepreneurial and less intimate roles in part for the uninterrupted family time they bring.

"Look, I'm as committed to being a doctor as anyone. I went back to work six weeks after my boys were born. I love my job," said Dr. Kate Dewar. "But I was in tears walking out of the house that first day. I'm the mother of twins, and I want to be there to feed them, play games with them or open presents with them on Christmas morning. Or at least I want the option to do those things without fearing I'll be called back to the hospital."

The pain of that first week's separation was lessened somewhat because she worked in the hospital's new pediatric emergency department. "I felt better knowing that at least I was taking care of somebody else's babies even if I couldn't be with mine," she said.

Three Generations of M.D.'s

The story of the Dewars demonstrates how these trends have played out over nearly seven decades.

Dr. William Dewar II opened his practice 67 years ago at his home in Catasauqua, Pa., an Allentown suburb, with his wife, Thelma, as his lone nurse and assistant. He delivered babies and set broken bones. Sick patients showed up on his doorstep at all hours, with some sleeping over. When they needed to be hospitalized, Dr. Dewar oversaw their care. Patients paid cash — $2 for an office visit and $3 for a house call, fees that covered most needed medicines.

Thelma Dewar handled the bills and laboratory tests, often by cooking urine samples on the stove before analysis.

"I loved my practice. Totally loved it," Dr. Dewar said. "You were in touch with the patients. They were part of your family."

The culture of medicine at the time was decidedly macho. Residents routinely worked 120 hours a week, often staying at the hospital for days at a time. Indeed, the term "residency" comes from the first such program at Johns Hopkins University, established around the start of the 20th century, where doctors lived in a dormitory next to the hospital, a monastic life inimical to women who wanted children. As the residency requirement took hold nationally, the share of female doctors, already low, fell further. Dr. William Osler, the founder of the residency program, celebrated such sacrifices.

"What about the wife and babies if you have them? Leave them," Dr. Osler wrote. "Heavy are the responsibilities to yourself, to the profession and to the public. Your wife will be glad to bear her share of the sacrifices you make."

After 25 years in Catasauqua, the Dewars moved to the Honesdale area, and their oldest son joined the practice — which by then had moved to an office building. But working outside the home meant that Dr. William Dewar III saw less of his children than his father had seen of his — though he attended more of their sporting events. He tried to make a point of eating dinner with the family, but often failed because his sickest patients spent more time in the hospital as fewer people died at home. Even when he did make it home for the meal, he often left afterward. He was on call seven days a week, limiting vacations.

"We always joked that as soon as Dad's butt hit the chair for dinner, his beeper would go off," Dr. Kate Dewar said.

A Changing Field

But even as the two men tried to keep their practice the same, the world around them kept shifting. Their patients' medical needs grew steadily, and specialists began to take over the more complicated procedures.

After his father retired at 75, Dr. Dewar merged his practice with those of four other doctors, eventually moving into a large building that once housed the town's bowling alley. Thousands of paper records occupy much of the building's space, and 35 employees handle the billing and other clerical functions.

And the burden of trying to be all things to all of his patients became unmanageable. In 2006, after Wayne Memorial Hospital hired hospitalists — doctors who specialize in taking care of hospitalized patients — Dr. Dewar finally gave up hospital rounds.

For his hospitalized patients, the change meant putting their trust in a doctor who knew them less intimately but was more available and more adept at hospital care. "My patients are getting better care now in the hospital," Dr. Dewar said.

And the change saved him hours of work each week. "It meant getting off the hamster wheel," he said.

In her third year of medical school, Kate Dewar shadowed clinic doctors treating patients with everyday illnesses. It was just the kind of medicine her father practices: advising the obese to lose weight and the smokers to quit, and prescribing cholesterol and hypertension medicines again and again. "I hated it, and I felt terribly guilty," she said. She called her father and broke the news that she wanted to work in a hospital. He was very supportive, she said.

Her father also remembered being both envious and disappointed. "On the one hand, it bothers me that the generation of doctors that my daughter is in doesn't work as many hours and isn't willing to do the stuff that I did," he said. "On the other hand, I'm almost a little jealous."

Such mixed feelings are common among older doctors, many of whom have been unable to sell or even give away their practices because younger doctors are not willing to work the hours required. Indeed, Dr. William Dewar III's practice has hired nurse practitioners recently, in part because it cannot recruit doctors.

Merritt Hawkins, a top doctor recruitment firm, reported that 51 percent of the positions it filled in the past year were for hospitals, up from 14 percent eight years ago. And even a growing share of the jobs the company filled in private practices included income guarantees from hospitals. Young doctors surveyed by Merritt Hawkins listed quality of life well above finances as the most important factor in their job searches, and just 1 percent said they were willing to practice alone. Many young doctors will not take jobs that require them to be on call.

Almost every hospital in the country has vastly expanded its medical staff. Lehigh Valley Health Network in Allentown, where Dr. Kate Dewar currently works, has gone in seven years from 100 to 500 employed doctors.

A Different Pace

A day spent with Dr. Dewar in the emergency room of Lehigh Valley Hospital-Cedar Crest had the feel of an episode of "E.R.," far different from "Marcus Welby, M.D.," which her father grew up with. The attending physician was Dr. Rezarta Lloyd. The two women had complete control over a section of the emergency room reserved for the most serious cases, and there were many that day: a young woman with a deep gash on her hand that Dr. Dewar stitched closed, an older woman with suffocating fluid around her heart, and a 35-year-old man with a high fever, abdominal pains and an altered mental state.

The two doctors ordered a CT scan of the man's midsection, and they stood next to a computer terminal and toggled through images of his internal organs, deeply concerned.

"Everything looks so inflamed," Dr. Dewar said as Dr. Lloyd nodded. "Look at the stomach. Look at the wall there. What is wrong with this guy?"

The more challenging the case, the better the women liked it. Each tended to collect rare and difficult interventions like merit badges. Standing beside the display screen, Dr. Dewar told a story about having a patient whom she thought might need a tracheotomy, a rarely done procedure in which a tube is put into a patient's throat to prevent suffocation. She had a "trach kit" placed in the patient's room just in case.

While attending to another patient, Dr. Dewar noticed a commotion outside the patient's room and yelled at her colleague on duty, playfully threatening bodily harm to anyone else daring to do "her" tracheotomy.

The tracheotomy story was interrupted by another phone call from one of the hospital's radiology technologists, whom Drs. Dewar and Lloyd had sparred with all day. The two had sent a patient whose damaged eye was bleeding, leaking fluid and bulging. The doctors had described the patient's condition in the order they submitted for the CT scan, but the technologists rarely seemed to read those instructions closely, Dr. Dewar complained.

"No," she said. "We're looking for a globe rupture."

Then a 22-year-old man showed up with flu symptoms. Dr. Dewar, pregnant at the time, kept her distance while Dr. Lloyd went to his bedside and, later in the day, prescribed antivirals.

"My big fear is patients with the flu," Dr. Dewar explained. "Pregnant women were the ones who died from H1N1, so Dr. Lloyd protects me by seeing them herself. I had my flu shot and all that, but if I don't have to risk it, I won't."

Pregnant residents are another sign of medicine's shifting culture. Residency hours and practices were once so grueling that few doctors deliberately became parents during those years. But in an effort to reduce fatigue-related errors, residency hours were reduced in 2003 to 80 per week. Last year at Johns Hopkins, the birthplace of the residency program, more than a third of the women in one internal medicine residency program became pregnant or were the mothers of young children — an outcome that would have been unimaginable to William Osler.

Still, carrying twins on a job that requires hours of walking between rooms was not easy. On a nine-hour shift in her 29th week, she drank three liters of water and snacked constantly on cheese crackers.

But when her shift ended, Dr. Dewar went home and put up her feet. And no pager threatened her rest — something her father has rarely experienced.

Electronic prescriptions do not reduce errors: study

It seems like a completely logical use of computerized medical records: having doctors fill out prescriptions electronically instead of scribbling their instructions on slips of paper.

A new Toronto-based study, however, found that giving doctors access to electronic prescribing did nothing to cut the rate of potentially catastrophic prescription mistakes, the most desired result of e-prescriptions.

The findings suggest the computerized system added its own, unique errors, and that Canada needs to rethink the hugely expensive push to digitize health information, the lead researcher says.

"I think this is a thing we do because it seems to be the modern thing to do, because medical care is relatively fragmented and it seems to be a way to co-ordinate it, and we live in the computer age, so why shouldn't we try?" said Dr. Merrick Zwarenstein, who headed the study at Toronto's Sunnybrook Health Sciences Centre.

"But is the literature showing the difficulties and the challenges and the relatively modest benefits that each of these things obtains?"

Such systems seem to work well only when implemented painstakingly and gradually, modifying off-the-shelf software to fit the needs and culture of the physicians who use them, said the senior scientist with Sunnybrook and the Institute for Cllinical Evaluative Sciences.

Even with billions of dollars being spent on the field, that typically does not happen now, he said.

A top official with Canada Health Infoway, the federal-provincial body that is trying to spearhead the adoption of electronic health records across the country, said the Toronto research may offer some helpful lessons, but argued the bulk of evidence points to e-prescribing being a success where it has been put in place.

"Off-the-shelf systems have also been able to show benefits quite quickly," said Jennifer Zelmer, a senior vice-president with the agency. "The research is consistent — e-prescribing definitely can improve patient safety."

There is no question that the traditional, handwritten process of ordering medication for patients can cause serious, even fatal problems. Previous research has suggested that adverse drug events — where medicines inadvertently make patients sick — occur in up to 3% of outpatient visits, with more than half blamed on prescription errors. A 2004 Canadian study estimated adverse events caused as many as 22,000 preventable deaths in hospitals annually, with 24% of the events triggered by drug mix-ups.

At Sunnybrook, the researchers convinced 33 doctors to participate in the study of a commercial program where prescribers use a handheld device to pick the patient and drug names from drop-down menus. The machine either zaps the prescription electronically to pharmacies that are part of the system, or prints out paper versions for patients to take with them.

The trial lasted 66 weeks, with the electronic system available for 44 weeks, and traditional paper and pen for the remainder.

Even when the e-prescribing was available uptake was relatively modest — about 8% of prescriptions were filled out electronically. Regardless, when the two periods were compared, the rate of prescription errors was the same for both — about 6% In fact, there were actually significantly more cases where pharmacists had to call the doctor's office to clarify prescriptions during the electronic period.

It is difficult to know exactly why e-prescribing did not help, but it is likely doctors made missteps like tapping on the wrong patient or drug name in the device menus, said Dr. Zwarenstein.

"It's designed to fix certain old sources of errors, but it creates new ones," he said. "Those are not errors that would have occurred in the same way on hand prescriptions."

As for the reluctance of doctors to use the system — even when provided with ample training and support — he said many likely doubted there was much of a problem with paper prescriptions, and saw the digital process as taking up more time in already busy schedules.

Dr. Zwarenstein said most other studies of e-prescribing to outpatients were not rigorous, controlled trials, and likely biased toward a positive result. The only solid evidence that computerized prescriptions can reduce errors has come from two U.S. hospitals where the systems were implemented over periods of as long as 40 years, with changes to the software implemented along the way, he said.

He said the 6% error rate his study identified means electronic prescribing must be made somehow to work, and the impetus for ushering in other types of electronic health records is, if anything, even greater. But the physician argued the concept has to be introduced only after careful consultation with the people who will use it.

"We have to do this, but how to do it right is no small task."

Mom’s ills prompt daughter’s cry for help | Comment | London Free Press

Four months ago, my life was like pretty much every other baby boomer's. I worked, spent time with my husband and married children, travelled occasionally and had my mother to dinner twice a week. And four months ago, my mother broke her leg, ending her independent living in a senior's complex in the heart of London.

Mom is 86 years old. She has severe arthritis, high blood pressure and diabetes. In a flash, our lives were filled with hospitals, doctors and new routines. Both of our lives were turned upside down. Weaving through the medical maze, my mother finally was able to settle in to a nice retirement room where she consistently used her walker, and she enjoyed meals with other seniors and was even beginning to participate in community programs.

Disaster struck as her arthritis symptoms flew out of control. Was this just a temporary flare-up? I watched as my mother cried in pain every day. At times the symptoms were managed but she was on drugs causing other extreme symptoms and the temporary relief she felt would quickly fade as new drug regimes were tried. Sadly, the only drugs that seemed to give relief were drugs she could not remain on for long.

The retirement home my mother sits in is wonderful, the staff friendly and helpful and the responses timely. But retirement homes are not staffed for care with feeding and dressing and daily care. Long-term care facilities are. Our community care access people were very concerned, responsive and helpful with offering different professionals and suggestions. The news was grim. Mom needed a long-term care facility and the wait was going to be months.

For the last six weeks, we have introduced private care people who take care of my mother a number of times daily. Arthritis is intrusive, pain is very hard to manage, and I watched helplessly as my mother was able to do very little for herself. We both worried if she was becoming too much of a nuisance to the retirement staff. The pain continued, along with the crying with each movement. Believe me the body makes a lot of movements in an hour, let alone a day.

This week, I was reduced to calling my mother's personal care physician to beg him for pain relief. Pleading for help becomes a way of life when one watches a mother in a lot of pain. This is not the first time I have made such pleading phone calls on my mother's behalf. She clearly has deteriorated well past what a retirement home can offer her, and what extra paid professionals can offer her too. Mom needs a long-term care facility and unfortunately needs it now.

Yet, if we go the route of sending Mom to the hospital to attempt to get the pain under control, we risk introducing her to infections in the hospital setting and we could end up on a crisis list for a home. Some of you are probably reading this and thinking this is a good thing, to be considered a crisis. What it does mean is that we are at the mercy of her potentially being placed in a home out of the city, and away from family.

There is no good answer here. The waiting continues and so does the chronic pain of the arthritis, often unabated and out of control. Pain management seems simple enough but managing multiple medications requires careful scrutiny and choices. Strong pain medications also come with choices and often destroy the needed muscle mass for comfortable living. The doctor does what he can, the retirement home tries to offer any extras they can, and compassionate care people are kind and willing. The community care access team is working hard to meet the needs of a long waiting list.

Every day, my mother lives in pain. The kind of pain that makes you cry out. The kind of pain that you would not allow your pet to endure, let alone a family member. We have a lot to learn about helping the ill elderly. I visit my mother every day after my work day is done. I watch her struggle. Our once enjoyable conversations are gone. It is all about getting through another day. My husband and adult children help and support, and we all feel helpless to make a difference. Extended family offer support and encouragement too. We know she needs long-term care.

I am my mother's daughter. I have arthritis too. My own doctor says there is nothing I can do about it to slow down the progression. Am I looking in the mirror at my own demise? In the meantime, it is not about me. My mother watches the clock all the time now. I wonder what she is hoping for.

Barb Dorrington is a London resident.

Friday, April 1, 2011

Doctor and Patient: The Rise of Desktop Medicine -

Recently, a colleague lamented a change she had noticed among the young doctors at her hospital. "They are always in front of the hospital computers," she said. "I never see them with patients, but I can always find them sitting at a terminal."
She paused for a moment, then added uncomfortably: "These days I probably spend as much time looking at the office computer as I do looking at patients. It's just not like the old days."
Doctors have a tendency to veer toward nostalgia; but lately a kind of mass sentimentality has overtaken the profession. At conferences, in medical journals, and even within the pages of fiction, doctors from all generations are found longing for one vestige of their clinical past: bedside medicine.
With stethoscope and reflex hammer in hand, leaders of this movement to bring bedside medicine back have warned of the demise of the patient-doctor relationship while lovingly describing the details of the healer's art – encounters in which patients recount symptoms and doctors search for physical signs, tapping deep into their wells of clinical judgment to deduce the causative diseases and prescribe the appropriate treatments. Like artisans of an ancient guild, these master clinicians can ferret out the strawberry tongues (scarlet fever), the candied breath (liver failure) and the Sister Mary Joseph signs (widespread abdominal cancer), while lesser doctors can manage only by relying on expensive laboratory tests, statistical models and desktop computers.
Unfortunately, the reality is that it's not so easy to jettison the lab results and technology. Most of us might dream of employing our clinical acumen while sitting at our patient's bedside, yet more and more we find ourselves in front of our computers.
But it's not, according to a recent commentary in The Journal of the American Medical Association, because we are failures or have given up on practicing good medicine. Rather, it is a result of a shift over the last 20 years in how doctors and patients think about health and disease.
"We can't sit here and throw up our hands and say that medicine is going to hell in a handbasket," said Dr. Jason Karlawish, author of the commentary and an associate professor of medicine and medical ethics at the University of Pennsylvania School of Medicine in Philadelphia. "There has been a fundamental change in how we think about what health and disease are and how we practice medicine."
That change revolves around the computer. While health care was once premised on the physical exam and a physician's diagnostic skills, it has become increasingly reliant on computer-based syntheses of clinical findings and measurements, complex statistical models and risk factor calculations. "Now we look at various factors that put a patient at risk, then calculate whether it is worth treating that patient," Dr. Karlawish said.
In other words, we have gone from bedside medicine to desktop medicine.
One example of a disease in the new desktop medicine era is dyslipemia, or abnormal blood cholesterol and blood fat levels. Cholesterol-lowering drugs were initially used to treat patients who suffered from inherited diseases that prevented them from processing cholesterol, putting them at risk of hardening of the arteries and heart attacks. Over time, though, clinical trials revealed that the same drugs could reduce heart attack risk in some otherwise healthy individuals who simply had high cholesterol.
What was once a natural variation became a full-blown disease. Or at least a chronic condition that needed to be managed.
"Contrary to the bedside medicine model, where diseases are based on discrete symptoms and clinical findings," Dr. Karlawish said, "desktop diseases are contingent on the results of a clinical trial showing that some intervention can influence how patients will do over time."
With these new "diseases," physicians and scientists can design computer-based programs that tap into a vast network of data and calculate an individual's risk of doing poorly and the need for treatment. For example, doctors can now enter information into specialized Web sites (or, in one case, an iPad app) that, with a single click, can spew out a patient's 10-year risk of bone fractures from osteoporosis, or of a heart attack from high cholesterol and high blood pressure.
While those who advocate a return to bedside medicine may shudder at the image of a doctor turning to her iPad for clinical wisdom, refusing to acknowledge this new model of disease and care has its own perils. "There's been a lot of progress in health care because of desktop medicine," Dr. Karlawish said. "We can't laugh like it's the next generation of goldfish swallowers, because it won't go away."
Moreover, in the world of desktop medicine, larger social forces influence which health risks are deemed worth identifying and reducing; and the political, economic and personal repercussions can be enormous. Cholesterol-lowering drugs, for example, are now the most widely prescribed medication in the United States; and a single brand may save one patient out of several hundred from a heart attack. But that medication will also cost several dollars per pill for patients and generate billions of dollars in revenue for a pharmaceutical company.
"We need to be cognizant that certain individuals or groups of individuals may have control over the very numbers that define disease," Dr. Karlawish said.
The real challenge for doctors will be taking advantage of the technology without losing the art of diagnosis and bedside manners. "If doctors change simply into some kind of hybrid of a financial analyst risk broker," Dr. Karlawish said, "we will have lost an essential part of what doctors should be doing."
"At the same time," he added, "we can't pretend that desktop medicine isn't here. We have to be aware so that it serves our patients and not other interests."

At Home in the Hospital -

Some patients cope with long hospital stays by bringing in a few books and a favorite pair of slippers. For others, an incandescent lamp can offer light that looks more like home. A favorite Steelers blanket may adorn a bed. The mother of one young woman brought in a sewing machine and worked happily and busily during her daughter's monthlong hospitalization.

But some patients go even further, transforming their hospital rooms and their hospital lives into as much a version of home as they can.

One patient, in her 20s and struggling with a very bad diagnosis, turned her room into an oasis from the clinical feeling of the hospital. Pictures and cards were taped up everywhere. Her sister stuck paper flowers to the walls, making a swirl of color and warmth amid the bland hospital white. She used oils, with diffusing sticks, to perfume the air, so her room actually smelled good. Even the IV pole got decorated with ornaments, including ceramic angels there to wish her well.

And of course she had her own clothes, her own pajamas, her own blanket. Her charming boyfriend slept over. Family and friends came often, bringing not just comfort and support but a flavor of the outside world — of the full life that was waiting for her.

Her room was small, but all the personal touches made it feel less like the hospital and more like home. It was a pleasure to take care of her because it meant going into her wonderfully transformed room.

Beyond the room, though, she lived her hospital life like a person, not just a patient. She and her boyfriend went for walks, holding hands. Her family brought in food she liked. She would stay up late, refuse to have vital signs taken during the night, and then sleep late the next day, confidently defiant of our structured, early-to-rise practices in the hospital.

Her dog was the one thing from her life outside the hospital that could not cross that rigid hospital barrier. Many of the pictures taped to her walls were pictures of her beloved pet, a tiny dog with floppy fur that fell over its eyes. She really, really wanted to see her dog.

Lydia, our amazingly kind patient relations representative, decided to bring the dog to the hospital.

The first hurdle in pulling this off was the doctor. Would the patient's attending physician agree to a visit with the dog? The answer turned out to be yes, so the next question was where to hold the meeting.

Because many of our patients have suppressed immune systems, bringing the dog onto the oncology floor was not allowed. Lydia arranged to use a meeting room one floor below ours. She had the walls and floor wiped down with bleach and thoroughly scrubbed as a precaution to protect the young woman, whose immune system was also suppressed.

Her mother was bringing the dog, and when the time came, I went with the patient down to the meeting room. Because of her vulnerability to infection, she was not allowed to hold her dog. But she sat in a chair, wearing a yellow isolation gown and latex gloves, and watched while I held out toys for the dog to chew on, shake about and growl at.

The dog seemed content just to play. And even though the patient couldn't hold her dog, she also looked happy, the way I imagined she probably looked away from the hospital.

Soon, it became clear that having time with her beloved pet wasn't really just about the dog. We had been sitting in a windowless hospital room in the middle of winter, yet it felt like someone had opened a window on spring, letting the light and the smells of wet earth and budding flowers come flowing in. Somehow, that little floppy dog had brought the outside world into the hospital.

In the book "The Cancer Journals," the poet and activist Audre Lorde reflects on her experience coping with breast cancer, writing that each woman responds to the crisis that cancer brings to her life "out of a whole pattern, which is the design of who she is and how her life has been lived. The weave of her everyday existence is the training ground for how she handles crisis."

That certainly seemed to be true for my patient, who coped with cancer treatment by weaving her everyday existence into her life at the hospital, whether it was pictures from home or time with her dog. Now that patient is out in the world. She isn't completely well, but she is back to living her life.

Federal Dialysis Program Is Questioned by Kidney Specialists -

Of all the terrible chronic diseases, only one —end-stage kidney disease — gets special treatment by the federal government. A law passed by Congress 39 years ago provides nearly free care to almost all patients whose kidneys have failed, regardless of their age or ability to pay.

But the law has had unintended consequences, kidney experts say. It was meant to keep young and middle-aged people alive and productive. Instead, many of the patients who take advantage of the law are old and have other medical problems, often suffering through dialysis as a replacement for their failed kidneys but not living long because the other chronic diseases kill them.

Kidney specialists are pushing doctors to be more forthright with elderly people who have other serious medical conditions, to tell the patients that even though they are entitled to dialysis, they may want to decline such treatment and enter a hospice instead. In the end, it is always the patient's choice.

One idea, promoted by leading specialists, is to change the way doctors refer to the decision to forgo dialysis. Instead of saying that a patient is withdrawing from dialysis or agreeing not to start it, these specialists say the patient has chosen "medical management without dialysis."

"That is the preferred term," said Nancy Armistead, executive director of the Mid-Atlantic Renal Coalition, a Medicare contractor that collects data and patient grievances.

The phrase, she says, "acknowledges that death is imminent," but it also sends an important message: "We are not just sending people home to die. We are offering palliative care."

A committee of the Renal Physicians Association recently formulated guidelines to use in deciding when dialysis is appropriate. It provides questions that doctors should ask themselves before suggesting the treatment. One is the "surprise" question: Would I be surprised if this patient is dead within a year?

But, said the committee's chairman, Dr. Alvin H. Moss, a nephrologist and ethicist at West Virginia University, the task ahead is like turning around an ocean liner.

"Clearly, when the program was initiated in the 1970s, the hope and expectation was that this program would return otherwise healthy people back into society so they could work and be productive," said Dr. Manjula Kurella Tamura, a kidney specialist at Stanford. But, she added, "dialysis at the end of life is a different sort of treatment."

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Thursday, March 31, 2011

Top 10 | iMedicalApps

Our "Top 10″ section contains some of our favorite medical App rankings, along with App comparisons and other favorite posts. - iPhone, iPad, and Android Medical App Reviews and Commentary

iMedicalApps is an independent online medical publication written by a team of physicians and medical students who provide commentary and reviews of mobile medical technology and applications.  We receive over 300,000 views a month by the medical community.  Reviews and commentary are based on our own experiences in the hospital and clinic setting and creative and content control are strictly managed by the medical professionals running the site.

Surgeon educates over 100,000 through iTunes podcasts aimed at medical students | iMedicalApps

One of the beauties of mobile medical education is how quickly you are able to distribute multimedia content, especially if it's free.  This is due to the ubiquitous nature of certain platforms, such as iTunes, on every iOS device — over 120 million of them.  These mobile devices have significantly lowered the barrier of entry for medical professionals wishing to reach millions of individuals.

A University of Alberta professor and surgeon, Dr. Jonathan White, decided to make 10 to 30 minute iTunes podcasts of his lecture material in order to reach his students at a different level.  His medical students feel the free Podcasts are more captivating, and enable them to consume a greater amount of content when they are short on time:

Dr. White states he has reached 120,000 individual people since starting the podcasts in 2008 on iTunes.  Whether those individuals are medical students or patients, he isn't sure — but his content is aimed at students in the health care profession.

The podcasts themselves are informative, concise, and even entertaining.  They are divided into chapters, enabling you to listen to only the portions you want, such as treatment or etiology.  While listening to the short podcasts won't make you an expert in the particular disease pathology, they are definitely at the level of a medical student, and possibly an intern.

They cover subjects ranging from GI, such as Diverticular Disease, to Cardiology, such as Aortic Dissections.  Overall, the podcasts are extremely easy to download to your iPhone, iPod Touch, or iPad, and are a great form of mobile medical education.  If you don't have an iOS device, you can listen to them via iTunes and the Surgery101 website.

The Podcast usually occurs on a weekly basis, and there are currently over 35 episodes thus far.  We encourage our readers to check out Dr. White's website, and to subscribe to his podcast.


iTunes Surgery 101 Podcast link

Source: CBC News

Wednesday, March 30, 2011

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The Hard Reality of Cancer Treatment -

Months into Ruth's treatment for breast cancer, after she had completed her chemotherapy, she needed a break. So did I. We cobbled together our airline miles and made plans for a short break in the Caribbean.

One long flight and then a change to a 10-seater and up in the air again. The small plane was hot and Ruth took off her Courtney Love travel wig. Her hair had started faintly coming back — as our friend Steven put it, the blond shoots of her re-emergence. Signs of life.

The little island's runway suddenly came into view as we cleared the saddle between two hills and started to dive bomb. It looked like the pilot would either hit the tarmac or plunge into the ocean. I clutched the armrests and blurted out, "I think we're going to die." Ruth responded as she gazed out her window at the blue sea, "Wouldn't that be ironic?" We hit hard, the plane rattled, and we came to a safe stop.

When we got back from our vacation, our next appointment was with radiation oncology. It was supposed to be routine, no surprises. We'd be in and out of the doctor's office in an hour, her radiation treatment would get scheduled, and then I'd take her out to dinner.

Radiation treatment is the most passive part of cancer treatment. For a few weeks you show up every day for your dose, which takes a few minutes, and then you go home. And at least at Memorial Sloan-Kettering Cancer Center, where Ruth was being treated and I am a doctor, the whole process runs like the Swiss railroad, precisely on time.

After a few minutes, we were put into an exam room and in came the medical resident — a trainee only a few years out of medical school. Polite and personable, he looked like he was going to get us efficiently through this part of the process.

A few questions, a quick exam, a visit from the attending doctor, and we'd be gone. We sat there well rested, ready for the next and final phase. I was even a little tan.

"Now, I just want to review your history with you,'' the young doctor began. "Last fall you felt a lump. And then in October … Dr. Cody felt it … Later the biopsy showed … and the surgery … and the pathology showed … and then chemo … And they first gave you …"

Ruth stopped him. "You don't have to go through this all," she said. "It's all in the record."

He nodded. Then he went right back to reciting her history. The dates, the events, all in a list, one by one.

When he said "October 1st," I saw my friend and colleague, Dr. Chip Cody, touching my wife's breast and heard him deliver the news. When he said "surgery," I remembered Ruth waking up from anesthesia. "Feels like I just got off the overnight to London," she had mumbled. A groggy dehydrated disorientation. Then she threw up.

By the time the young doctor was done, maybe three minutes had elapsed, and he had rattled off every white knuckle spin of the roulette wheel. The lymph node assessment, the bone scan to determine if the cancer had spread beyond the reach of the surgeon, the heart tests as part of her clinical trial, the inspection for whether the tumor was fueled by estrogen and progesterone hormones, and the tests to see if it would respond to the drug Herceptin.

Every single test and finding affected what treatment Ruth would get and what our chances were for the future. The minutes, the hours, the days, the weeks, the months that had passed since that sunny Wednesday morning when the suspicious lump was diagnosed as cancer.

The resident didn't realize how absurd and unfeeling it was to distill the hardest year of our lives into such a condensed narrative, which to me amounted to saying, "Well Odysseus got on the boat, stopped a few places and then reunited with his wife."

He was oblivious to the agony he was causing us as he perfunctorily rattled off the events, even though he had doubtless gone through the same routine many times with many other patients.

Over the years, with my white coat on, so have I, and I have never thought about the effect it might have when I do it. Recounting a patient's history: it's just something that we doctors do. Part of our routine.

But at that moment, in that small office with no windows, about 500 feet away from where I am doctor not husband, I realized how badly I had misjudged what the year would be like, and how poorly prepared I was for it.

When we first fully understood Ruth's diagnosis, I had instinctively pulled out a calendar, just as I had when we found out Ruth was pregnant. I counted the days and weeks, and the breaks in between, factored in a few delays, and concluded" "Seven months. Next summer this will all be over."

My plan was to just hold my breath until then. Just seven months.

It had seemed to work at first. Ruth and I had tackled cancer like a to-do list, ticking off each item and moving to the next step. But we didn't realize how the grind of symptoms and fears and steps of treatments would slow time's passing, or how each step, although we finished it, would never be quite tucked away.

It was only after listening to the doctor's rote description of her diagnosis and treatment that I realized how wrong my approach had been. If I kept holding my breath through this long hard year, I would end up like Shelley Winters after her long underwater swim in "The Poseidon Adventure." Present, but quite dead.

Because the truth is, I couldn't hold my breath and wait for cancer to be over. Each step couldn't be left behind as it was conquered. We couldn't go through treatment and then back to our life because the cancer and the treatment was and always would be our life.

It was a hard landing.

Dr. Peter B. Bach writes about his wife's breast cancer diagnosis and treatment.

Anorexia, Bulimia, Binge Eating Affect Older Generation Too -

More than 10 million Americans suffer from anorexia, bulimia and other eating disorders. And while people tend to think such problems are limited to adolescence and young adulthood, Judith Shaw knows otherwise.

A 58-year-old yoga instructor in St. Louis, Ms. Shaw says she was nearing 40 when she decided to "get healthy" after having children. Soon, diet and exercise became an obsession.

"I was looking for something to validate myself," she told me. "Somehow, the weight loss, and getting harder and firmer and trimmer and fitter, and then getting recognized for that, was fulfilling a need."

Experts say that while eating disorders are first diagnosed mainly in young people, more and more women are showing up at their clinics in midlife or even older. Some had eating disorders early in life and have relapsed, but a significant minority first develop symptoms in middle age. (Women with such disorders outnumber men by 10 to 1.)

Cynthia M. Bulik, director of the Eating Disorders Program at the University of North Carolina, Chapel Hill, says that though it was initially aimed at adolescents, since 2003 half of its patients have been adults.

"We're hearing from women, no matter how old they are, that they still have to achieve this societal ideal of thinness and perfection," she said. "Even in their 50s and 60s — and, believe it or not, beyond — women are engaging in extreme weight- and shape-control behaviors."

Younger or older, patients tend to engage in the same destructive behaviors: restricted eating, laxative abuse, excessive exercise and binge eating. And the trigger is often a stressful transition — in a young person, perhaps going away to college or living through her parents' divorce; in later years, having a baby, sending a child to college or going through her own divorce.

"I think there is a probably much higher percentage than we've been able to identify," said Tamara Pryor, clinical director of the Eating Disorder Center of Denver, who has been studying about 200 cases of midlife eating disorders. "I think out there in the workaday world there are a large percentage of women who just fly under the radar. They are subclinical and you don't question them, because in so many other areas of their life they look so functional."

One concern, she and other experts say, is that as women get older they are more adept at concealing the problem, and symptoms may be attributed to aging rather than to an eating disorder.

For instance, when a thin adolescent stops menstruating, doctors typically raise questions about weight and eating habits. But in Ms. Shaw's case, they assumed it was early menopause. When she developed anemia and osteoporosis, they didn't guess that the true cause was years of malnourishment.

And though one doctor suggested that Ms. Shaw looked as if she needed to "eat a cheeseburger," most praised her efforts to keep her weight down and her commitment to exercise.

"One of the things we're working very hard to do is to make sure this stays on physicians' radar screens so they can recognize and distinguish between menopause-related changes, real health problems and eating disorders," Dr. Bulik said. "Often they don't ask the question because they have in their mind this stereotypical picture of eating disorders as a problem of white, middle-class teenagers."

For Ms. Shaw, diet and exercise overtook her life. She spent more and more hours at the gym — even on family vacations, when she would skip ski outings with her husband and sons in favor of workout time.

"None of my friends, my ex-husband, no one ever said anything," she said. "It was no one's job to fix me, but I wish someone had said to me: 'I miss you. You're gone. You're so obsessed.' "

Finally, a yoga instructor sounded the alarm after Ms. Shaw had twice fallen, breaking an elbow and then later her pelvis. "There's nothing left of you," the instructor told her. "Only you can decide if you're going to change that by feeding yourself."

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