Hello, doc, I’m your mystery shopper

You know what my first reaction was to the federal government’s plan to use mystery shoppers to gauge how easy – or difficult – it is for patients to make a primary care appointment?

Bring it.

The concept has been getting a ton of negative feedback. Online critics are calling it “government snooping” and an “anti-doctor campaign.”

To recap: The Obama administration is recruiting a team of mystery shoppers to pose as new patients and call doctors’ offices to see how much effort it takes to get an appointment. One of the purposes of this research is to gauge the accessibility of primary care doctors – a key issue as millions of Americans gain health insurance coverage under provisions of the Affordable Care Act. Another purpose is to look at the extent to which physician practices might be accepting new patients with private insurance while turning away those on Medicaid and other public programs. The project, which is still only a proposal at this stage, will potentially be carried out in nine states, including Minnesota.

If this sounds subversive, consider the state of primary care these days.

It is a cold, hard fact that patients frequently have to wait several weeks to see a doctor for something that’s non-urgent. Those of us who live in rural communities encounter this reality every day. The last time I made a doctor’s appointment, the earliest available opening was seven weeks out. I’ve had other wait times ranging from 10 days to three weeks. For a specialist once, it was five weeks.

Is this a hardship? It wasn’t for me, but it might well have been for someone else. How many times do patients end up in an urgent care clinic or an emergency room because they couldn’t – or wouldn’t – wait that long?

Fact #2: Many primary care doctors already have full panels and are no longer taking new patients.

Last month the Massachusetts Medical Society released a report on wait times and physician access. Of the 838 physicians who responded to the telephone survey, 51 percent of internists and 53 percent of family doctors were not taking new patients. The average wait time to see an internist was 48 days; for family doctors, it was 36 days. Average wait times also were rising for specialists such as orthopedic surgeons, cardiologists and gastroenterologists.

Fact #3: An estimated 65 million Americans live in officially designated primary care shortage areas. Shortages are the worst in areas that are rural, poor and/or minority.

Fact #4: Publicly funded programs such as Medicaid (and, here in Minnesota, the MinnesotaCare program) are not attractive to physicians because of the paltry reimbursement. One of the most severe access problems in Minnesota is with dental care for individuals on MinnesotaCare, because so few dentists will take these clients. It is not mandatory for providers to accept Medicaid, MinnesotaCare or any of the other public programs – but when they opt out, access inevitably is diminished.

Fact #5: Access is integral to the overall functioning of the health care system. When patients do not receive timely access to care, the result can be more use of expensive emergency care, higher risk of hospital admissions and readmissions, inadequate management of chronic diseases and worse health outcomes.

I would have cringed if the mystery shoppers pretending to be patients were actually coming to the clinic and using valuable appointment time needed by real patients. Based on what I’ve read about this initiative, however, it doesn’t appear to extend beyond the appointment-making process.

To those who are already familiar with the primary care shortage, this entire proposal may sound like a product of the Department of Duh. But if the federal government is serious about addressing what ails primary care, which is the better strategy: collecting hard evidence or relying on anecdote, perceptions and personal experience?

There’s also something valuable about measuring physician access from the perspective of patients themselves – even if the patients are secret-shopper fakes. Most of what we currently know about wait times and provider shortages is derived from surveys of physician practices and insurers, not from patients. No matter how much clinicians and policymakers think they know about the patient experience, they can’t claim to truly know if they don’t include the patient’s viewpoint in their data collection.

If I have any reservations about the mystery shopper proposal, it’s this: When reimbursement for Medicaid, MinnesotaCare and other publicly funded health programs is so disappointing, there’s virtually no incentive for any practitioner to want to see these patients. It’s easy to criticize them for their refusal yet overlook how they’re financially penalized when they do accept patients on public programs. This is an untenable situation for everyone involved, and it’s to be hoped that the information collected by the mystery shoppers will lead to some genuine and constructive change.

If there’s a better way to collect patient access data than by using mystery shoppers, I’m all ears. In the meantime, it’s hard to see how a physician with a well-run practice would have much to fear from a phone call from a government-funded mystery shopper.

Addendum: Here’s the posting in the Federal Register.

Update, June 29: The heat appears to have been too much; the Obama administration announced yesterday it has shelved its plans for the mystery shopper survey. Perhaps the idea was a public-relations disaster from the start – but it was dismaying to see how much of the debate was focused on the survey methods rather than on the bigger picture of access to health care. Doctors and politicians seem to have had plenty to say; where’s the voice of patients?

Image: Wikimedia Commons

The annual physical: yes or no?

It’s almost July, which means a postcard will soon be arriving in the mail, reminding me my cat is due for her yearly visit to the veterinary clinic. As usual, I’ll make an appointment and bring her in (although I suspect she’d rather we just skip the whole deal).

Do annual visits to the doctor make sense? Are people healthier when they receive yearly checkups, or is the yearly visit something we do mostly because we think we’re supposed to?

There’s a fair amount of debate in the medical world about the value of that time-honored custom, the annual checkup. Many experts question whether it’s really necessary to subject healthy, asymptomatic adults to a battery of one-size-fits-all tests that might or might not be helpful.

As long ago as 1989, the U.S. Preventive Services Task Force, an independent panel of experts that weighs the evidence and issues recommendations on the use of screening and preventive health care services, found insufficient proof to endorse the benefits of the standard yearly checkup for otherwise healthy adults.

The task force has not suggested that people can skip seeing a doctor unless they’re sick. Rather, guidelines by the USPSTF, researchers and other physician groups increasingly have tilted in favor of individualized assessment and counseling based on the patient’s age, gender, risk factors, health history and preferences. In other words, EKGs don’t need to be administered to every middle-aged person who comes in for a physical, nor does everyone need to have annual chest X-rays or a comprehensive blood panel unless there’s a reason for doing so.

This isn’t always an easy message to convey, especially to an American public who’s accustomed to being told to get screened for everything.

The whole issue, in fact, is more nuanced than it appears. When a group of researchers undertook a review a few years ago of the evidence on the pros vs. cons of the routine physical, the results were mixed. In their findings, published in 2007 in the Annals of Internal Medicine, the researchers reported consistently clear benefits for regular cholesterol screening, gynecological exams, Pap smears and fecal occult blood testing. Regular physical exams also appeared to be reassuring for patients. But the benefits were less clear on other measures, such as whether regular checkups resulted in better clinical outcomes, fewer hospitalizations or lower health care costs.

Why, then, do we continue to have regular checkups, and why do most doctors continue to believe they’re an important part of health care? The real benefit, it seems, lies in the intangible things: the opportunity for doctor and patient to get to know each other and to develop a relationship when the patient is well rather than sick or in the middle of a crisis.

Dr. Steven Reznick, who has a concierge practice in Boca Raton, Fla., tackled this very issue last week in a guest essay at Kevin, MD. “Is it cost-effective? Does it prevent disease? It doesn’t matter,” he wrote. “It is an essential part of the development and continuation of the doctor-patient relationship.”

It’s also a way to benchmark the patient’s health from one year to the next and address important issues such as previous illnesses, family history and lifestyle, Dr. Reznick writes.

In a column that appeared a couple of years ago in the Wall Street Journal, Dr. Benjamin Brewer takes the debate one step farther:

The annual physical gets a thumbs-down from public-health researchers who find no real evidence to support its effectiveness, despite tradition and widespread use.

Physicians continue to perform the exams, patients continue to request them, and many insurers pay for them. The question is why? Should we keep spending money on a health-care intervention without a proven benefit?

My answer is yes. I believe there is more to the annual exam than researchers have studied so far. If they haven’t found a direct benefit, then I’d say they’re not asking the right questions.

Health is more than the absence of disease, and quality care is more than the sum of the tests that can be done on your organ systems. Relationship-based care has a beneficial impact on health quality, costs and outcomes that goes way beyond disease detection and health screening.

There’s nothing wrong with debating the value of the annual physical exam. Indeed, it’s a question that needs to be asked. But like many things about health care, the answer isn’t always straightforward or easy to quantify. Even though we might not be able to objectively measure the benefit of the yearly exam, it seems it’s still a worthwhile thing to do.

The summer of being unscheduled

Back in March, Pamela Cytrynbaum, who blogs at Family Goes Strong, started receiving all the brochures for music camp, science camp, soccer camp, art camp, theater camp, swimming lessons and the 1,001 other scheduled activities to keep kids busy during the summer.

What if… families just… well, didn’t plan anything? she wondered:

What happens if there’s no cruise director for a kid’s summer?

Good parents must get on this or all the good spots will be taken and your kid will… will what? Will do what? What is just over the abyss of not getting on it? What hell lies on the other side of a lazy, relaxing, uncivilized summer?

What lay on the other side, in her case, was an unstructured summer during which her daughter made new friends, helped organize a cookie and lemonade stand, rode her bike, ran through the sprinkler, wrestled with the dogs, climbed trees and played endlessly.

Cytrynbaum writes, “I discovered we lived in an actual neighborhood with actual neighborhood kids. Once I started flinging open the door and letting my daughter out into the (small) world of our backyard, common areas behind the house, cul-de-sac a block away, the Universe opened up.”

Every summer, parents face the question of what to do: Do you schedule your children with plenty of activities so they don’t get bored or mindlessly fritter away the summer? Or do you allow them mostly unstructured time to just play and be kids?

There’s evidence to support both approaches. Once the novelty of summer vacation wears off, kids can run out of things to do and resort to less productive activities such as spending too much time watching television or playing video games or, in some cases, getting into trouble.

Dr. Steven Richfield, a child psychologist and author of “The Parent Coach,” observes that when kids perceive summer as “time off”, it can create unrealistic expectations that “set the stage for a host of problems that turn siblings into adversaries, produce unruly kids, and find parents deep in the trenches of child management.”

Children need some predictability in their lives, maintains Dr. Bonnie Socket, a licensed psychologist and certified school psychologist:

It is important to remember that most children do best when they have some sort of routine built into their day. While free time should definitely be part of your child’s summer experience, some routine and structure will help maintain a balance to the day and your child will be happy to know what is in store for the next day.

There’s also the issue of academic backsliding over the summer months, which has been documented in a number of studies and can occur regardless of a family’s socioeconomic background.

But the flip side is that in their zeal to provide their kids with an enriching summer, parents can end up with the opposite problem – overscheduling that leaves children with little opportunity to play, explore and learn how to handle unstructured time.

Some experts think the consequences could go even deeper. Cytrynbaum brought up some intriguing research I hadn’t encountered before: By depriving their children of the opportunity to just hang out and play with other kids, are parents raising a generation of youngsters who are less empathetic?

She cites a study conducted among more than 14,000 college-aged students that found a 40 percent decline in empathy scores compared to previous generations. The authors of the study, one of the largest of its kind so far, connected their findings at least partially to a loss of free time and outdoor play with other kids. Their theory: When children don’t have a chance to spend unstructured free time with other youngsters, they don’t get to know each other well and they have fewer opportunities to learn and practice empathy.

Whether you agree with this or not, it does raise some interesting questions about the long-term impact of how kids these days spend their summer vacation.

When I was a kid, there was a certain amount of structure during the summer. My siblings and I were expected to make our beds every day, set the table at dinnertime and help out around the house. There were swimming lessons, crafts at the park and trips to the public library.

But we also played a lot. We made forts under the picnic table. We climbed the apple tree in the back yard. We rode our bikes and played in the sandbox. We splashed in the wading pool. At the end of the day, our feet were so black from running around barefoot that we weren’t allowed in the house until we’d been hosed off on the back steps.

I’m sure there were days when it rained or someone was cranky, but I don’t really remember it. Mostly what I remember is that summers were the best time ever. There would be plenty of time later for the schedules and responsibilities of adulthood.

What do readers think? How much free time should children have during the summer? What approach have you used with your own children?

Photos: Top – Wikimedia Commons; bottom – West Central Tribune

In pursuit of patient satisfaction

If a new report from HealthGrades is any indication, hospitals are making progress on the patient satisfaction front.

Using the federal government’s Hospital Consumer Assessment of Healthcare Providers and Systems survey data, HealthGrades found a 1.8 percent annual increase in the number of positive responses.

Some areas especially stood out. Patients who participated in the survey were most satisfied with the instructions they received when they were sent home from the hospital. They were least satisfied with the explanation of the medications they were being given and with the quietness of their hospital room.

Hospitals who performed among the top 10 percent were more likely to have patients say they’d recommend the hospital to their family and friends.

(A couple of notes about the methodology: The HCAHPS data were obtained from the Centers for Medicare and Medicaid Services and covered the period from April 2009 to March 2010. Patient satisfaction data was analyzed from 3,797 U.S. hospitals.)

What’s interesting about this analysis is how the hospitals stack up in comparison to each other. The HealthGrades report notes that 80 percent of survey participants at the best-performing hospitals would recommend the facility to others, compared to 55 percent of respondents at the worst-performing hospitals. That’s a sizable gap, and it indicates some hospitals clearly do better than others at meeting patients’ expectations – or maybe what it really means is that these hospitals are better than most at creating a culture that fosters positive patient experiences.

You could argue that the high-performing organizations have simply figured out how to game the system, or that their patient population is easier to please The analysis in fact revealed geographic differences in the degree of patient satisfaction. Patients in the Upper Midwest were the most likely to give their hospital a good rating, while those from the urban East Coast were the least likely to be satisfied – a case of Minnesota Nice vs. Noo Yawk aggression, perhaps.

A study by Press Ganey, one of the leading private organizations for conducting and analyzing patient satisfaction data, found that the time of the year can make a difference too. Patient satisfaction scores tend to drop during the winter months, the company found, speculating this may be due to a combination of the weather, higher hospital occupancy during winter and issues with patient flow.

I suspect it isn’t by accident, though, that some hospitals are better at achieving patient satisfaction. Those who study the success stories have found these hospitals usually have several ingredients in common:

- They emphasize patient education and communication.

- They pay attention to details such as room temperature, food service, noise levels and the cleanliness of the hospital environment.

- They consistently track performance metrics to identify and address weaknesses and/or emerging problems.

- They have made patient satisfaction one of the key values of their organization and have embraced it from the top down and the bottom up.

- They view patient satisfaction as an ongoing goal.

- They create a supportive environment that helps staff do their best.

In other words, what it generally comes down to is organizational culture.

Hospitals don’t need to be large or have a ton of resources to achieve this. When the HealthGrades report singled out those whose HCAHPS scores placed them in the 90th or better percentile last year, the list in Minnesota was dominated by non-metro hospitals: Willmar, Alexandria, Faribault, Red Wing, St. Cloud and Waconia, to name a few.

If you looked at each of these hospitals more closely, you’d probably find varying sets of factors that contributed to their high patient satisfaction scores. But what they more than likely have in common is a core philosophy that patient satisfaction matters, and it’s this that seems to set the high-performing hospitals apart from the rest of the pack.

Photo: Wikimedia Commons

After the storm

In the months after Hurricane Andrew devastated south Florida in August of 1992, researchers assessing the emotional well-being of survivors made some concerning observations:

When 400 people living in Dade County were interviewed six months after the hurricane, 25 percent reported distress that was severe enough to meet the criteria for post-traumatic stress disorder. The researchers found clinically significant cases of depression and anxiety among some of the survivors. Many others experienced general distress, health problems and chronic struggles in their daily life.

Most significantly, a small percentage of people continued to show signs of distress and impairment nearly three years later.

As news footage has been unfolding this year of earthquake and tsunami devastation in Japan, towns laid waste by tornados in the United States, wildfires burning in the Southwest and floodwaters swelling rivers and creeks, it’s worth remembering some of the lessons learned from previous natural disasters: that they carry an emotional impact often lasting long after the disaster response teams and outreach services have packed up and moved on to the next crisis.

There’s a large body of research on how people fare psychologically and socially after a natural disaster. Often the emotional toll is far greater than the financial impact of losing a home, business or possessions.

PTSD appears to be the most common issue, followed by depression and anxiety. When studies have followed survivors over a long period of time, most of these people eventually recovered or at least had some improvement in their symptoms. But researchers have consistently found a minority of individuals who are not able to get better on their own.

Disaster survivors who experience long-lasting difficulty seem to have some factors in common. They’re more likely to be dealing with other life stresses, such as financial problems. They also tend to have lower self-esteem and weak social ties.

Various studies have found that children, older adults and individuals from diverse cultures can be especially vulnerable to distress and psychological problems after a disaster. This isn’t absolute, however, and often can be mitigated with the right kind of support.

The National Center for PTSD notes that individual beliefs seem to matter when people are dealing with the emotional impact of natural disaster: “Adults at risk for mental health problems think that they (a) are uncared for by others, (b) have little control over what happens to them, or (c) lack the capacity to manage stress.”

In a very real sense, the volunteers who show up to clear away tornado debris or mop up floodwaters are demonstrating social support that can help survivors move forward.

Not all types of social support are helpful, though. Studies of assault victims and motor vehicle crash survivors have “consistently shown that the presence of negative social support impedes recovery,” the National Center for PTSD explains. “Family members’ critical comments about the length of time taken for recovery seem to stand in the way of trauma victims’ recovery for treatment of PTSD.”

Some of this is obvious. Everyone who experiences or witnesses a natural disaster is affected in some way, and grief, shock and distress are painful but normal reactions. Extra effort may be needed, though, to identify and help survivors who are more likely to have trouble recovering. Nor does the recovery period end when the news cycle moves on to the next big thing. The aftermath can be lengthy and takes time, patience and understanding.

Additional resources:

Minnesota Department of Health

Federal Emergency Management Agency

National Resource Center on Advancing Emergency Preparedness for Culturally Diverse Communities

Photo: After the Joplin, Mo. tornado – Associated Press

Guys and health

If the movies, TV and popular magazines are to be believed, the most important health issues for men consist of: receding hairlines, sex, heart health, sex, fitness, sex, sex, prostate health and sex.

Perhaps these all have some basis in fact. But real men’s health is considerably more nuanced than the many stereotypes would suggest.

In honor of Men’s Health Week this week, let’s take a closer look at men and their health:

- Most adult American men are healthy, or at least view themselves as healthy. According to the National Health Interview Survey for 2009, only 12 percent of the men 18 and older who were interviewed reported their health as fair or poor.

- The leading causes of death for American men, in descending order, are heart disease, cancer and accidents/unintentional injuries. (For women it’s heart disease, cancer and stroke; injury is sixth on the list.)

- Men have a lower life expectancy than women.

- Men are more likely than women to drink excessively. They’re more likely to binge-drink and more likely to meet the criteria for alcohol dependence. They also have higher rates of alcohol-related hospitalizations and deaths than women.

- Although it’s often thought women are more likely to have depression, men can be depressed too – and when they are, it frequently goes undiagnosed. This is partly because men might ignore their depression or refuse treatment. Depression also can be harder to recognize among men because it manifests itself differently than among women. It can take the form of anger; aggressive or risky behavior such as reckless driving; alcohol or substance abuse; infidelity; and escapist behavior such as spending long hours at work or in sports.

- Men are underrepresented in the doctor’s waiting room. According to CDC statistics, about 20 percent of men don’t see a doctor at all; the comparable figure for women is 10-12 percent. Many men, especially young men, may be missing out on opportunities to assess their health and lower some of the risks they face.

- Prostate cancer is the most common form of cancer diagnosed among men but there’s often confusion about when they should be screened. The recommendation from the U.S. Preventive Services Task Force: There’s insufficient evidence on the benefits vs. the harms of routine screening for prostate cancer, and screening isn’t recommended for men older than 75. The American Cancer Society echoes these guidelines. The advice from the ACS: Men should talk to their doctor and make an individual decision on whether to be tested.

Health care traditionally has been male-oriented, leading to some significant gender imbalances in what we know about health, sickness and wellness. But just as women haven’t always received a good deal when it comes to understanding their health, men haven’t always gotten a good deal either. Getting past the stereotypes is a constructive way to start making this better.

Photo: Scott Bakula, Ray Romano and Andre Braugher in “Men of a Certain Age.” Photo courtesy of TNT.

Linkworthy 3.2: the midsummer edition

Ah, midsummer. What’s not to like about long June days? Grab your lawn chair and laptop for this latest edition of Linkworthy, a roundup of thought-provoking and/or interesting items encountered recently online.

- What do you say to someone who has cancer (or any other serious disease, for that matter)? “You look great” and “What can I do to help?” are not on the most-recommended list for Bruce Feiler, who vented in last week’s New York Times about “‘You look great’ and other lies.”

What’s wrong with “You look great”?

“We know we’re gaunt, our hair is falling out in clumps, our colostomy bag needs emptying,” Feiler writes. “The only thing this hollow expression conveys is that you’re focusing on how we appear.”

He suggests helpful things to say instead: “I should be going now.” ”Would you like some gossip?” “I love you.”

Feiler’s essay seems to have hit a nerve. More than 160 readers responded with their own experience and insights. An especially thoughtful reaction came from Lisa Bonchek Adams, a blogger who has been on the front lines of breast cancer. The problem with lists of what not to say, she writes, is that one size doesn’t fit all – and if people become too self-conscious about saying the wrong thing, they may withdraw altogether:

In those cases you may lose people who may have been well-intentioned. Sometimes forgiveness and compassion need to go out from the person who is sick and not just flow to them.

People who’ve known me for a long time know that I had non-Hodgkin’s lymphoma several years ago. Probably my least favorite on the list of what-do-you-say was “Call me if I can do anything” because it was so vague. What if the one thing I needed most was someone to change the cat litter? Would the response have been “Sure, great!” or would it have been, “Eewww, no thanks”?

People who made non-specific offers of help invariably meant to be kind and supportive, however – and that’s what counts. It seems wiser to cultivate gratitude for people’s good intentions, even when they’re sometimes clumsily expressed, than to react with eye-rolling or annoyance. (Readers are welcome to share their own thoughts in the comment section.)

- “Give doctors a break,” implores Dr. Elaine Schattner, who blogs at Medical Lessons. Her plea is prompted by ”a heartless op-ed” by Dr. Karen Sibert, a Los Angeles anesthesiologist, who asserts medicine cannot be a part-time endeavor.

Is this yet another round in the mommy wars, or is the deeper issue one of balance between work and the rest of life?

The huge investment in a medical education confers some responsibility to use that education to benefit patients, Dr. Schattner writes. But what if a physician truly needs to cut back her hours or stop seeing patients altogether? Macho attitudes about medicine can put tremendous and ultimately harmful pressure on doctors, she writes. “A flexible, more realistic system would allow doctors, in whom the system has invested so much, and who have invested so much of themselves, to take time off when they need it, and flexibility in their schedules, so they can continue in their careers after prolonged illness.”

Other reactions to Dr. Sibert’s op-ed can be found here and here.

- Good news for those of us who can’t imagine life without a companion animal: A new study published in the Clinical and Experimental Allergy journal has found that the presence of a dog or cat in the household doesn’t increase children’s risk of developing allergies.

Researchers followed a cohort of children from birth to adulthood, checking in periodically to collect information about their exposure to dogs and cats. At age 18, 565 of the study participants gave blood samples that were analyzed for the presence of antibodies to dog and cat allergens.

Interestingly, the results suggested that being exposed to an animal during the first year of life seemed to be critical – and that for some people, this early exposure may actually be protective.

The men in the study who lived with an indoor dog during the first year of life had about half the risk of becoming sensitized to dogs as those whose families didn’t have a dog. Both men and women were about half as likely to become sensitized to cats if they lived with a cat during the first year of life.

- How much do you think it costs for adult children to be caregivers for their aging parents – $10,000? $50,000? $100,000?

A new study by MetLife calculates the total: a collective $3 trillion in lost wages, pension and Social Security benefits for those who take time off work to care for their parents. On average, women lose $324,044; for men, it’s $283,716.

The researchers analyzed data from the National Health and Retirement Study to assess how much caregiving is provided by baby boomer adults for their older parents, its impact on their careers and the amount of potential lost wages and retirement benefits.

Among other findings from this study: Adult children 50 and older who both work and provide care for an older parent are more likely to report their health as fair or poor than those who don’t combine work and caregiving. The percentage of adult children providing personal care and/or financial assistance to their parents has more than tripled over the past 15 years and currently represents 25 percent of adult children, primarily baby boomers.

A key conclusion of the report is that workplaces need to become more flexible and adopt policies that support working caregivers. The report also points to a need for more resources to help middle-aged caregivers with retirement planning and stress management.

- Other worthwhile reading: GeriPal, the geriatrics and palliative care blog, reflects on “Lessons I Learned by Examining Miracles.” A compelling story from CNN examines miscarriages and when they become something that requires deeper medical investigation. The latest issue of Proto, the magazine of Massachusetts General Hospital, contains several intriguing in-depth articles. If you have time to read just one, check out “Foreign Bodies,” a fascinating and creepy look at the strange things people swallow and the early-20th-century laryngologist from Pennsylvania who amassed a collection of swallowed objects. The article includes an online photo gallery that will make you think anew about the hazards of swallowing foreign objects.

Photo: Wikimedia Commons

Snapshots from the cancer conference

If you noticed a lot of headlines lately about what’s new in cancer care, there was a reason for it: The American Society of Clinical Oncology held its annual meeting last week in Chicago, during which literally hundreds of papers were presented on the latest oncology research findings.

The list of studies that were presented is quite impressive. In the area of HER2/ER breast cancer alone, at least 300 abstracts were submitted for the conference. Other studies addressed cancer prevention, tumor biology, emerging new therapies, and patient and survivor care.

Given this overwhelming amount of information, it would be impossible to cover all the bases. But as I followed the news from the conference this past week, a few things floated to the top:

- A lot is happening in the world of clinical research. Among some of the headlines: “Avastin Boosts Survival in High-Risk Ovarian Cancer”; “Hedgehog Drug Stirs Hope for Some Pediatric Brain Tumors”; “New Regimen Shows Promise in Advanced Renal Cell Carcinoma.”

What I don’t see are significant strides forward. Many of these studies showed benefits that were mostly incremental – a slowing in the progression of the disease, perhaps, or a slight lengthening of survival time. It has now become possible to live longer with cancer, but for all too many patients, death is still the outcome.

It begs the question: How do we define success in cancer treatment? Is the treatment successful if it allows the patient to live six more months but doesn’t cure him or her of the disease? How much should the cost of treatment vs. the likely benefit be a consideration? These issues need more scrutiny.

- If cancer research can demonstrate what’s promising or what’s effective, it also can help identify which treatment strategies are less effective.

A study on options in the treatment of advanced kidney cancer, for instance, found there’s little survival advantage in combining interferon with a monoclonal antibody; interferon alone worked equally well. Another study poured cold water on the notion that selenium could prevent new cancers among people who were cured of non-small cell lung cancer; the selenium didn’t work.

While this may sound disappointing, it does clarify what’s unlikely to help the patient, allowing clinicians to focus on treatment options that hold a better chance of success.

- It was disheartening to see cancer survivorship continue to get short shrift. The master list of abstracts on the ASCO site doesn’t even give it a separate category; it’s lumped in with patient and survivor care, a grouping that also includes cancer-related complications, end-of-life care and “other.”

Patients need to find ways to live well once their cancer treatment has ended. The oncology community must either step up to the plate or ally itself with other specialties – internal medicine, perhaps – to forge improvements in this area.

- One study that should have received more attention than it did: A research team examined what happens when newly diagnosed patients try to make their own first appointment with an oncologist. Research assistants posing as patients were able to successfully make an appointment only 23 percent of the time; 25 percent of the time they couldn’t even reach someone at the scheduling desk. The biggest barrier was that patients had to first send a copy of their medical records before they could be scheduled for an appointment. In about 18 percent of cases, a doctor’s referral also was required.

This may not have been a large or glitzy study but it demonstrated how challenging it often is for patients to navigate the system on their own. Although hospitals and academic centers might think their services are accessible, actual patient experience sometimes tells a very different story.

- The most reassuring message from the ASCO conference: Major time, thought and energy are continually being invested in new and more effective cancer treatment strategies. We know more than we did 10 years ago or even five years ago, and this knowledge is continually being translated into clinical care for real-life patients. Even when progress is measured in small steps, it’s still progress.

Image: Leukemia cells as seen under a microscope. Source: U.S. Public Library of Science

Ageless artists

When a team with the Research Center for Arts and Culture at Columbia University was gathering information for a study on aging artists, their subjects had plenty of observations to share, from the thoughtful to the matter-of-fact.

“My job is a verb – constantly learning,” an 87-year-old actor from New York City declared. A former Rockette dancer, age 68, confided, “It’s the jumping that’s hard. I can still kick.”

The report, aptly titled “Still Kicking,” was released Thursday. (An executive summary is here; the full report is here.) Although the topic – the well-being of aging professional performers in New York City and Los Angeles – may seem rarefied, the lessons are not.

The researchers found that most of the artists they interviewed were still working, engaged with their art and their audiences and highly satisfied with their lives. As the baby boom generation reaches retirement and America wrestles with thorny social and policy questions about aging, perhaps we should turn to performing artists as an example of how to rescript the story of our lives and grow older with grace and resilience, the authors suggest. “This is one case where artists can show the way.”

The findings in “Still Kicking” are based on interviews with 219 professional performing artists in New York City and 51 in Los Angeles. The artists ranged in age from 62 to 97 and included actors, musicians, dancers, choreographers and singers.

One of the clearest things that emerged is that older performing artists enjoy fulfilling lives. They are satisfied with their lifetime performing career and most would choose the same career all over again. They take more artistic risks than when they were younger and have a deeper creative experience.

Although the majority of those who were interviewed lived alone, they communicated daily or weekly with other artists. More than half continued to be working artists and didn’t plan to retire until they were 90. A professional singer told the interviewers, “Singers don’t have retirement plans; I have to sing until I die.”

On the practical side, most of the artists who were surveyed had health insurance. Ninety-two percent had a will. The majority also had a designated health proxy and power of attorney.

The study found that performing artists face challenges as they age. Physical limitations were one of the barriers, especially for dancers. Many of the artists said they would stop working if injuries or declining health made it too difficult for them to continue. For some, the report noted, “retirement is both a financial and an emotional impossibility.”

Ageism was another barrier. The study recounts the experience of one actress:

One fit, attractive, brown-haired 75-year-old actress whom we interviewed, was called to audition for the role of a 75-year-old. She had to go out and buy a white wig and borrow a cane to emulate what the casting director thought 75 looked like.

The number of performing artists who work sporadically or who are freelancers also means that many fall outside the safety net of health and retirement benefits for a significant portion of their career.

Some observations from the report:

- As Americans live longer and the proportion of older Americans continues to grow, an emphasis has emerged on “creative aging” and the role the arts can play in promoting better health among older adults.

- Older artists can serve as a model for more flexible approaches to work, semi-retirement and access to health insurance.

- Older adults can feel fulfilled and supported in their later years when they have meaningful work and are engaged with their community.

This is believed to be the first study that has examined the needs of performing artists as they age. It seems to point the way toward models that other aging adults can follow. “A greater understanding of aging artists’ survival mechanisms, their relationship to their work, to each other, and to the social systems which make their work possible can provide a beacon for a lifetime of meaning, often self-motivated and self-generated,” the study’s authors wrote. “This meaning is something to pass on to future generations and as part of their early and continuing education. It is a guide to what is most central in our lives, and to our individual legacies.”

Photos, from top: Jazz musician Ellis Marsalis Jr., age 77; actor/director Clint Eastwood, age 81, on the set of “Gran Torino” in 2008; actress Patricia Neal, age 85. Courtesy of Wikimedia Commons

The daily commute, biker-style

For some people, the physical activity of biking isn’t just a weekend thing; it’s their transportation mode for getting to and from work each day. They save money on gas, reduce their carbon footprint, and gain all kinds of health benefits besides.

Who are the bike commuters? More to the point, how do they do it? I happen to have one of these dedicated cyclists in my immediate family: my youngest brother, Joe, who bikes more than 11 miles (one way) from his home in Eden Prairie to Prime Therapeutics LLC in Bloomington, where he works as a senior legal assistant. The photo above is the view from his handlebars on a summer morning.

In case you’ve missed it on the calendar, it’s Bike Walk Week in Minnesota; Thursday is Bike Walk to Work Day. In honor of the occasion, Joe agreed to answer some questions about his bike commute and describe how he made it a successful daily habit.

What inspired you to start biking to work?

When I was growing up in Willmar, I tried to bike to and from work as much as possible. As part of a big family (three sisters, one brother), all with their own work and personal schedules, it just seemed easier to take my bike than to coordinate with everyone else. There is so much I enjoy about biking. Ever since I left Willmar, it has always been my goal to have a job that was close enough to bike to, via a safe route.

What did it take for this to become part of your daily routine?

It took a management training course where participants had to design and implement five projects, one of which could be entirely personal. I made my personal project to try biking to work at least once. I had to scope out the route, figure out how to take a suit and tie with me, and figure out how to get cleaned up before putting it on.

Once I had my bike commute routine figured out, it reminded me of the days when I would bike to my grocery store job in Willmar, and it became habit. The health benefits and the fuel savings were continuing motivators. My co-workers started taking interest too, asking me (usually on cold, snowy or rainy days), “Did you bike today?” or more often, “You didn’t bike today, did you?” It was really satisfying to be able to answer, “Why, yes, I did.”

That first year I biked to work 34 times. The next year, 48 times. After that, I started setting goals for myself, like “I will bike to work 100 times this year” (I actually came in at 107) and “I will use my bike to get to work more times than I use a car this year” (the final score was 135 by bike, 99 by car).

Tell us about your commute. How many miles is it? How long does it take? Do you have a special route?

I bike 11.4 miles from western Eden Prairie to Bloomington. It takes anywhere from 45 minutes (in fair weather, with a tailwind) to an hour and 15 minutes (in winter, through snow). I take the same route each day, in favor of trails over roads. I prefer to avoid sharing the road with latte-slurping, BlackBerry-using businesspeople.

Tell us about your bike.

It’s a Specialized Tricross. I put fenders on it so I can ride in the rain without getting a skunk-stripe up my back. I also have a single-wheeled “BOB” (Beast of Burden) cargo trailer to hold my duffel bag and occasionally a laptop. I think the trailer allows me more freedom than other bike commuters have. I can bike any day I choose, with very little planning. Many people I know will bring in their work clothes the day before biking because they have no means of getting those clothes to work on their bike.

What are some of the challenges you’ve had to overcome to become a dedicated bike commuter? How did you solve the challenges?

The biggest challenges were posed by our Minnesota winters, and the short days. The issues are visibility, traction, and cold. I solved the visibility issue by getting lights (including one I mount on my helmet – much better for getting a motorist’s attention than a light mounted to a handlebar) and a bright yellow windbreaker with reflective strips on it.

The traction issue took some trial and error. I started with studded tires, but I just didn’t like them. A wide, knobby mountain bike tire feels more stable, and seems to have just as good traction. The cold issue is still a little tricky. I have an array of clothes, like winter cycling tights, fleece shirts and vests, insulated hunting boots, bike-specific winter gloves, and a fleece facemask. I wear them in different combinations, depending on the temperature. I don’t bike if it’s below zero, but I see others who do.

What do you think you’ve gained by exchanging driving for biking to work?

Since 2009, I have avoided driving a car to work on 247 days, for fuel savings of about 213 gallons. (Not all of it was $3.79 a gallon gas, but you get the picture.) I have put about 3,300 fewer pounds of carbon dioxide into the atmosphere. I have kept some control over my weight – it plummets in April and May, and slowly goes up in December and January. My cholesterol readings are better than they were before I biked to work. Part of my ride is through wooded areas. I see and hear birds, deer, foxes and other wildlife. I smell lilacs in May. I arrive at work stress-free, and with at least a 45-minute workout behind me already. I arrive at home at the end of the day stress-free.

Rumor has it that you’re trying to organize a bike commuter club at your place of work. Tell us more about it.

I leave my business card on other people’s bikes with a short note asking if they’d be interested in forming a bike commuter group. I belonged to one at a previous workplace. We’d meet monthly and share tips on equipment that makes bike commuting easier, safety tips, online mapping tools (like cyclopath.org – limited to the Minneapolis-St. Paul area for now), and information on rides and riding clubs. I hope to recreate that at my current workplace.

By being very public in my workplace about my bike commuting, I have gotten several other people to try it. At least one has turned her health around by biking to work and using her bike to run errands around her neighborhood – she has lost significant weight and her doctor says she is no longer pre-diabetic.

What advice or helpful tips would you give to someone who wants to start biking to work?

Plan plan plan. There are several great websites that will show you how, such as Paul Dorn’s bike commuting tips or Penn Cycle and Fitness. Plot your route. Get your bike into good working order. If you can’t work in your biking clothes (or can’t bike in your work clothes), figure out how to get your work clothes to your workplace – such as with a backpack, panniers or a trailer, or by bringing them in by car the day before. If your ride is more than just a few minutes, and you’ll be working up a sweat, figure out where and how to get clean. If your workplace doesn’t have showers, there might be a nearby health club that you can use.

Joe doesn’t limit his bike-riding to the work week. He’s also an avid recreational biker and is participating this coming weekend in the Minnesota MS 150 to raise money for the National Multiple Sclerosis Society. You can support him here.

For another perspective on the benefits of riding a bike to work, check out what Dr. David Detert, a physician and bike commuter, has to say. Dr. Detert is with Affiliated Community Medical Centers in Litchfield and shared his thoughts at Discover ACMC, a blog recently launched by the regional multi-specialty network.