Tuesday, August 28, 2012
Monday, August 27, 2012
When it comes to medical care, many patients and doctors believe more is better.
"What people are not realizing is that sometimes the test poses harm," said Shannon Brownlee, acting director of the health policy program at the New America Foundation and the author of "Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer."
"Sometimes the test leads you down a path, a therapeutic cascade, where you start to tumble downstream to more and more testing, and more and more invasive testing, and possibly even treatment for things that should be left well enough alone."
Terrence Power of Breckenridge, Colo., said that after his wife, Diane, learned she had Wegener's disease, an uncommon autoimmune disorder, the couple found it difficult to refuse testing recommended by a trusted doctor. The doctor insisted on office visits every three weeks, even when she was feeling well. He frequently ordered blood tests and X-rays, and repeatedly referred her to specialists for even minor complaints. Even when tests came back negative, more were ordered, and she was hospitalized as a precaution when she developed a cold. During one six-month period, she had 25 doctor visits. The couple was spending about $30,000 a year out of pocket for her care.Have you experienced too much medicine? As part of The New York Times's online series The Agenda, I asked readers to share their stories. More than 1,000 responded, with examples big and small.
Some complained that when they switch doctors they are required to undergo duplicate blood work, scans or other tests that their previous doctor had only recently ordered. Others told of being caught in a unending maze of testing and specialists who seem to forget the patient's original complaint. I heard from doctors and nurses, too — health professionals frustrated by a system that encourages these excesses.
"He was convincing enough that we felt we needed to have it done," said Ms. Power, 60, who recalls being sedated before an endoscopy procedure, one of the last tests she allowed her doctor to perform. "When they were getting ready to knock me out I was thinking, 'Why am I doing this?' But we felt like the doctor knew what to do and we trusted him."
After several years of physical suffering and near financial ruin from the medical costs, the couple began questioning the treatment after consulting with other patients in online support groups. Mr. Power spoke with his own primary care doctor, who advised him to find a new specialist to oversee Ms. Power's care. "It's a really hard thing to determine when they've crossed the line," Mr. Power said. "You think she's getting the best care in the world, but after a while you start to wonder, what is the objective? He seemed caring, but he didn't really consider my wife's time and the suffering she was going through having all these tests done."
Under the new doctor's care, the regular testing stopped and Ms. Power was finally able to achieve remission. Now she sees the doctor only four or five times a year.
Sometimes the toll of too much medicine is brief, but emotional. Kara Riehman, 43, of Atlanta was vacationing in California when she lost a struggle with an ironing board in her hotel room and ended up with a black eye.
As the bruising peaked around 10 days, she called her doctor to make sure everything looked normal. But instead of seeing her, the doctor, through a conversation with the nurse, ordered a CT scan. She had no symptoms other than a bruised eye, but the doctor never spoke with her or examined her. The scan came back with an ambiguous finding, and the nurse told her it could be a tumor. She was then given an M.R.I. and for two weeks while she waited for the results, she worried she had brain cancer. The nurse called to tell her the M.R.I. was fine.
"It was really terrible," she said. "It was only two weeks, but there is a lot of cancer in my family. I never actually talked to my doctor through this whole thing."
The total cost to her insurance company was about $7,000. "It did change how I think about interacting with the medical system," Ms. Riehman said. "It made me much more of a questioning consumer."
Jim Donohue, a Brooklyn bank examiner, had to intervene on behalf of his father, now 79, who had a stroke in March 2007. Doctors in Florida put him on several medications, including two antidepressants, and soon after the man began hallucinating and showing signs of dementia. Mr. Donohue began researching the drugs, and learned they were associated with cognitive problems. He persuaded his father's doctors to change the medication, and his father quickly improved. He has since recovered, and has been living on his own for four years.
"All the medical professionals seeing him along the way, the hospital, twonursing homes and nobody thought of this," said Mr. Donohue, who said his father never should have been given a diagnosis of depression in the first place. "I don't know if we have too many specialists and every one is trying to practice their specialty, but it should not have happened."
When Kathryn Gullo, a teacher in the Los Angeles area, gave birth to twinsjust 25 weeks into the pregnancy, she was thrust into the intense medical care of the neonatal ward that saved her children's lives. But when her daughter, Grace, was 3 months old she was transferred to a different hospital, where the doctors insisted on subjecting her to a battery of tests for symptoms that other doctors had dismissed as normal for her condition. "We felt like we were being bullied," Ms. Gullo said. "I had enough faith in her previous doctors that it was then easy to say no."
The family switched hospitals and their daughter, now 5 and living with mild cerebral palsy and some vision and feeding issues, continues to require specialized care. But recently, when doctors suggested an M.R.I. that would require that their daughter be anesthetized, Ms. Gullo and her partner, Katie Ingram, said they asked two key questions: "What new information will this give us?" and "Will it change what we are doing?" After talking to the doctor, they declined the M.R.I.
"Not every mystery has to be solved, and not every problem has to be addressed," Ms. Gullo said. "That's hard to get your brain around."
Medicine is not a job. It is not even a career. At its heart, medicine is a calling.
A de-professionalized physician is inevitably a demoralized and burnt-out one.
Burnout is not a disease. It is a symptom.
Sunday, August 26, 2012
At first, I bristled at the idea of a cancer community. It was enough to have cancer; did I also have to share my experience with a group of strangers? It felt like extra homework. I hesitated for several months before going to my first cancer support group meeting. It was overwhelming to imagine hearing a dozen other stories as bad as, or worse than, mine.But something surprising happened. I started going to a young adult cancer support group at a Gilda's Club in upstate New York. For the first time since my diagnosis, I became aware of the fact that I was not alone in my fears and anxieties. Instead of feeling isolated in my experience with cancer, I began to realize there was an amazing community of people out there who were going through the same thing and could help me make sense of what was happening because they had been there themselves. Rather than feeling overwhelmed by the stories of the other cancer patients, I felt empowered and inspired by their strength and bravery.I've also found a surprisingly vibrant cancer network in virtual space -- on Twitter, Facebook and elsewhere. But in my experience, nothing can replace face-to-face interaction - even if no words are exchanged - with someone else who understands what you're going through. Two of my closest friends are people around my age whom I met at the hospital. We don't talk about cancer all the time. But knowing we can go there if we need to is invaluable.
Cancer feels messy inside and out, whether it's the disease itself, invading my body, or the material clutter that comes with disease: heaps of laundry piling up, stacks of unopened bills, orange prescription medication bottles crowding the bedside table, unanswered phone calls and e-mails, and more. I've found it helpful to try to control the chaos in small ways. Thoreau may not have been talking about cancer when he urged us to declutter, but the words "simplify, simplify" are always swirling in my head.I've gotten rid of unnecessary clutter in my room. I do regular mini-spring cleanings. What do I need? What can I put away in storage? It makes me feel better, even when cleaning tires me out. The way my surroundings look and feel has a big effect on my mind-set, especially when I am spending a lot of time resting in bed. I like to feel light.
Cancer also forced me to declutter my social life. When I found out I had leukemia, I was a recent college graduate. I had dozens of friends and acquaintances who formed a frenzied around-the-clock social network, talking and texting all day, every day. I was tied to my phone like any other 22-year-old. (Actually, I carried around two BlackBerries, one for work and one for personal use.)After my diagnosis, I tried to keep up my old ways, but there was less time. And I had much less energy. At first I felt guilty about not being able to maintain the same frequency of communication with my friends. But having cancer forced me to adopt a simpler schedule. I got a new phone -- an entry-level model with no e-mail, no Facebook, no keyboard for convenient typing. It has made me more aware of my time. I interact with a smaller group of people now. I'm less scattered and more present. And my relationships are stronger for it.
Instead of feeling mad at my body for failing me, I'm trying to give myself permission to take it easy. Easier said than done -- I almost didn't include this point because I'm still struggling with being kind to myself. I can't help but feel frustrated with myself when my body is overly tired, or when my mind is fuzzy. (They call it "chemo brain.") Sometimes I beat myself up over sleeping late into the afternoon. Or when I can't eat more than a few bites of any meal. Or when my muscles are too weak to pick up the pitcher of water on the counter. It's a daily struggle not to view these setbacks as failures or weakness. But I'm trying not to punish myself for the things I can't change. In the time we should be the easiest on ourselves, I've found that we can often be the most judgmental and harsh.
Do Something for Someone Else
The experience of being sick for an extended time means that you become the center of attention. Someone has to be taking care of you, people are always worried about you, and as the patient you spend a lot of time focusing on, well, you. That's a lot of yous. Cancer confers a certain kind of myopia. You're always thinking about your own health above all else. That doesn't leave a lot of time to think about other people. For the first time since my diagnosis, I've begun to send letters and care packages to other cancer patients and friends of mine going through a difficult time. By reaching out, I'm paying it forward for all the help and care I have received. I have found that small acts of gratitude or connectedness to other people who are suffering rescues me from my own self-pity and makes me feel like I'm capable of helping, and not just of being helped.
From the earliest days of my diagnosis, one of the casualties of cancer was the feeling that I had to shelve my dreams and goals. These paused plans -- dreams, interrupted -- weighed on me every day. I was constantly thinking of everything I could be doing - everything but lying in a hospital bed or sitting in an infusion suite. Right before I got sick, I was working on my dreams. Relying on research about Tunisian politics that I presented in my senior thesis in college the year before, I planned to travel to Tunisia, my father's homeland, to report on the revolution taking place there. Those were the early days of the Arab Spring. There was something big happening, and I was ready to cover it. But with my diagnosis came chemo and new plans. It was devastating to miss this opportunity.But I decided that I didn't want to let cancer put my life entirely on hold. It had always been my goal to be a writer of some kind. So now I'm going after that goal again. This time, however, I'm trying to write about a different kind of revolution.
Researchers who reviewed data on road accident deaths in the U.K. found that pedestrians over 70 were five times more likely to die from being hit by a car each time they went out than those age 21 to 29.
But elderly drivers were no more likely to die on the road than those in their twenties.
"The focus is usually on older drivers as a danger to themselves and other drivers," said Jonathan Rolison, who led the study at the University of Plymouth in the U.K.
But, he added, "the real issue isn't really safeguarding older drivers, it's making the road environment safer for pedestrians."
There has been a shift in recent years in both the U.K. and the U.S. toward more demanding license renewal processes for older adults.
As eyesight and cognitive abilities decrease with age, older adults are often assumed to be more dangerous on the road than younger drivers.
But previous research suggests that's not necessarily the case. In one U.S. study, researchers found male drivers were less of a risk to other road users at 70 years old than they were at 40.
For the new study, Rolison and his colleagues reviewed U.K. police records on all fatal road accidents reported between 1989 and 2009.
They found the risk of dying behind the wheel was similar for older adult drivers and young people every time they got in the car: 13 in 100 million driving trips ended in fatality among those under 29, compared to 14 in 100 million trips for people over 70.
The elderly still accounted for fewer driver deaths overall. In 2009, when 1,138 people died behind the wheel, one in 10 was over age 70, while younger drivers accounted for one in four of those deaths.
The pattern held for passengers, too, with no difference in fatalities per trip for old and young passengers.
For both drivers and passengers, risks were highest at both ends of the age spectrum and dipped among middle-aged people.
But when the researchers looked at figures for pedestrians, they found the risk of being killed when traveling on foot was five times higher for older people than for the young. Among older adults, 23 trips in every 100 million were fatal.
Older adults accounted for 37 per cent of all pedestrian deaths in 2009, according to results published in the Journal of the American Geriatrics Society.
For Rolison, the findings suggest that the increasing restrictions on older drivers are misplaced.
"Assessing whether older adults can drive is important, but the problem is it leads to policies which are becoming tighter and tighter and distract us from older adults at risk as pedestrians," he said.
According to Rolison, "older adults in a way are the ideal drivers, as they control their exposure to risk… If it's a rainy day, the older adults will stay at home, whereas people in middle age groups still have to go to work or drop kids off at school."
But elderly people are likely to be discouraged by the license screening process, Rolison said, and that could have important implications for their mobility and well-being.
Dr. David Carr, an expert in older driver assessment at Washington University in St. Louis, Missouri, agreed that more attention should be given to keeping older people safe as passengers and pedestrians, rather than restricting them as drivers.
"One of the big major points is that older drivers represent a small proportion of driver fatalities. They're not going out there and causing major problems," Carr, who wasn't involved in the new research, told Reuters Health.
But with baby boomers aging, "now is the time to focus on making pathways and transportation areas more safe," he added.
Crossing the road is particularly risky for older adults who can't judge speed and distance very well, said Rolison. They're safer if they are accompanied by a younger person.
Because older adults are often frail, they are also more likely to die of their injuries if they're involved in an accident, he explained.
Introducing traffic islands and giving old people more time to get across the road at pedestrian crossings might actually save more lives than tightening license restrictions, said Rolison.
"You shouldn't assume that your granddad should avoid getting behind the wheel, because he won't necessarily be safer walking down the street," said Rolison.