When the patient becomes the doctor’s caretaker

In a video interview, the anonymous doctor’s frustration comes through loud and clear. She takes care of complex patients with many health needs, often working 11 or 12 hours a day, sacrificing time with her family. Yet the message she constantly gets from administrators is that she’s “dumb and inefficient” if she can’t crank patients through the system every 15 minutes.

In a word, she’s abused.

And patients ought to care enough about their doctors to ask them if they’re being abused, according to Dr. Pamela Wible, who raised the issue recently on her blog. “The life you save may save you,” wrote Dr. Wible, a primary care doctor on the West Coast who established her own version of the ideal medical practice after becoming burned-out by the corporate model of care.

This is one of those issues that’s like lifting a corner of the forbidden curtain. Many patients probably don’t think too much about their doctor’s challenges and frustrations. After all, physicians are paid more than enough to compensate for any workplace frustration, aren’t they? Isn’t this what they signed up for?

The problem with this kind of thinking is that it ignores reality. Medicine, especially primary care, has become a difficult, high-pressure environment to be in. One study, for example, that tracked the daily routine at a private practice found the physicians saw an average of 18 patients a day, made 23.7 phone calls, received 16.8 emails, processed 12.1 prescription refills and reviewed 19.5 laboratory reports, 11.1 imaging reports and 13.9 consultation reports.

And when physicians are overloaded, unhappy and feel taken advantage of, it tends to be only a matter of time before it spills over into how they interact with their patients.

The million-dollar question here is whether patients can – or should – do anything about it.

Dr. Wible advocates taking a “just ask” approach. Compassion and advocacy by patients for their doctors can accomplish far more than most people think, she says.

One of her blog readers agreed, saying the pressures “must frustrate them beyond endurance. I’m going to start asking.”

Another commenter sounded a note of caution, though: “I feel there is a risk for a patient to ask such a question to a dr. who might be hiding how very fragile he/she is.”

More doubts were voiced at Kevin MD, where Dr. Wible’s blog entry was cross-posted this week. A sample:

- “Abused is a very emotionally loaded word that brings up powerful emotions and feelings like shame. I think if a doc is asked by a patient whether he/she is abused, they might actually end up feeling accused.”

-  ”I’m having a hard time imagining most docs responding well to their patients asking them if they are abused and I doubt that most docs would respond ‘yes, I am being abused’ to patients who do ask that no matter what was going on in their workplace. Nor do I think most patients want to spend a big chunk of their doctor visit talking about the doctor’s problems and issues.”

- “And what could I do if the answer is ‘yes’?”

I’m not sure what to think. At its core, health care is a transaction between human beings that becomes most healing when all the parties are able to recognize each other’s humanity.

Yet reams have been written about doctor-patient boundaries and the hazards of too much self-disclosure by the physician. Can it ultimately damage the relationship if the doctor shows vulnerability or emotional neediness? What are the ethics of a role reversal that puts the patient in the position of being caretaker to the doctor?

What do readers think? I’d like to know.

What price for peace of mind?

The patient is eight years out from treatment for breast cancer and is doing well, but four times a year she insists on a blood test to check her inflammation levels.

The test is pointless and has nothing to do with cancer or its possible recurrence. But what happens when the patient makes the request to the doctor?

“To my shame, I must admit, I order it every time,” writes her oncologist, Dr. James Salwitz (if you haven’t yet discovered his excellent blog, Sunrise Rounds, head over there and check it out).

The test may provide temporary reassurance for the patient. At $18, it isn’t expensive, and it’s considerably less harmful or invasive than other tests. But all the same, it’s useless, and it prompts Dr. Salwitz to ask: What can health care do to stem the practice of tests, procedures and other interventions that have no real benefit to the patient?

He writes:

Medicine is full of better-known examples of useless and wasteful testing. PSA and CA125 cancer markers that fail as screening tests. Analysis indicates they cause more harm than benefit. MRIs for muscular back pain, which will go away by itself. Unneeded EKGs, stress tests and cardiac catheterizations, instead of thoughtful conservative medical management. CT scans often take the place of sound clinical analysis and judgment. A 15-year study of 30.9 million radiology imaging exams published recently shows a tripling in the last 15 years.

These unneeded tests do more than waste dollars. If a test is not necessary and has no medical benefit, it can only cause harm. The test itself can cause problems such as excess radiation exposure, allergic reactions and discomfort. In addition, tests find false positive results, which lead to further useless testing or unneeded treatment.

It’s been rather remarkable to witness the pulling-away from excess tests and treatment that has taken place in American medicine in the past few years. There’s a growing recognition that there’s such a thing as too much intervention and that intervention is not automatically good for patients.

Moreover, we’re becoming more willing to talk openly about the tradeoff of benefit vs. harm. Not all that long ago, it was considered heresy to even suggest that women in their 40s didn’t absolutely need a mammogram every single year. The thinking on this is beginning to change as the evidence accumulates of mammography’s limited benefits for younger, low-risk women, and it’s showing up in patient decisions; a recent study by the Mayo Clinic found a 6 percent decline last year in the number of 40-something women who opted to have a mammogram.

It’s easy to oversimplify this issue, and indeed, it’s not always as straightforward as it seems. Interventions sometimes don’t look useless until they’re viewed afterwards through the retrospectoscope. At the time, in the heat of battle, they may seem necessary and justified. Nor do patients fit neatly into little diagnostic boxes; what may be unnecessary for one might make sense for someone else.

There’s a larger question, though, that we sometimes fail to ask: If something is medically useless, does it still have value if it gives the patient (and perhaps the clinician as well) some peace of mind?

To many patients, this is no small thing. It’s an emotional need that’s not easily met by science-based rational discussion about the studies and the actual evidence for the pros and cons. Unfortunately it’s also often abetted by consumer marketing that plays up the peace-of-mind aspect of certain tests while remaining silent about the limited benefit, the possible risk and the clinical complexity that may be part of the larger picture. The message can be sent that it’s OK as long as it provides the patient with some reassurance, and who’s to say this is entirely wrong?

Should clinicians be tougher about just saying no, then? It may be easier to give in, but does this constitute quality care? An interesting ethics case by the Virtual Mentor program of the American Medical Association explores some of the issues that make this so challenging: the responsibility of the physician to make recommendations and decisions that are clinically appropriate, the importance of respecting the patient’s autonomy and values, the balance between patient preferences and wise use of limited health care resources.

You could argue that patients should be allowed to obtain unnecessary care as long as they pay for it themselves, but does this really address the larger question of resources? Regardless of who’s paying the bill, unnecessary care comes with a cost. The blood test requested by Dr. Salwitz’s patient, for instance, likely would involve the use of equipment such as a disposable needle and lab supplies, staff time to draw the blood, analyze the sample, record the results, report them to the doctor and patient, enter them in the medical record and generate a bill (and I may have skipped a few steps).

Yet it’s not always easy to make this case to patients when what they’re really looking for is that elusive creature known as peace of mind.

Dr. Salwitz writes that he’ll be seeing his patient again soon and will try once again to persuade her that the test she’s asking for has no medical benefit for her. “I will try to replace this test crutch with knowledge, reassurance and hope,” he writes. “Maybe it will help us to understand each other a little better.”

This post was originally published on July 3, 2012.

Learning to give bad news: the patient’s perspective

After Suzanne Leigh’s daughter, Natasha, died from a brain tumor, her mother wrote an essay about “What I wish I’d said to my child’s doctor.”

One of her pieces of advice was to ban junior doctors from sitting in while sensitive, emotional conversations took place. She wrote, “When emotions are high and we are at our most vulnerable, we don’t want to be politely scrutinized as if we were lab rats – even if it means that those in training might lose out on a one-of-a-kind lesson in patient-doctor communications.”

My last two blog posts were about training doctors to deliver bad news and the benefits (or not) of scripting to help them through a difficult conversation. Where are patients supposed to fit into this? Suzanne raises the human side of the medical teaching process – that patients and families are often drafted into being practice cases for students, many times willingly but sometimes with awkwardness, reluctance or downright resentment.

It’s not an easy balance, though, between respecting the needs of patients and families at a supremely vulnerable time while creating opportunities for students to learn and gain skills. And it’s this balancing act that touched off a contentious online debate after Suzanne’s essay was reposted late last week on Kevin, MD.

It started with a medical student who wanted to make it known that although the patient’s and family’s wishes should come first, observation is one of the ways that students learn the difficult art of giving bad news.

It is not about scrutinizing the parents during the conversation; rather it is about seeing our mentors perform an essential skill that we will very shortly have to put into practice on our own. When patients and families are comfortable allowing us in on those conversations, we are immensely grateful, as it is really the only way we can learn an immensely difficult skill.

A blanket ban on junior doctors? One commenter called it “tantamount to saying ‘I want my child to benefit from the superior care that is available in a teaching hospital, but I think an important aspect of that teaching should be abolished, since it made me personally feel uncomfortable.’”

As you might guess, the discussion started to get lively.

Knowing when to refrain from judging and graciously leave the room is a learning experience too, wrote one commenter.

Should the need for training ever outweigh a family’s discomfort with having an audience during a difficult conversation? wondered someone else. Is it fair to lay guilt on people for saying no to the presence of a doctor-in-training in the room?

Another commenter, apparently a doctor, suggested that a family who requests privacy during one of these conversations “probably has a lower level of coping skills.” (What? Maybe privacy is just their preference.)

I’m not sure there ever can be a consensus on the right way to do this, other than that it’s a tough balance between the needs of the individual and the needs of society, in this case the value of a doctor who has learned to communicate well and skillfully when bad news is involved.

What’s consistently missing is the voice of patients and families themselves.

Doctors in training may learn from observing more experienced clinicians during a difficult conversation but this is only one side of the transaction. How was it perceived by the patient and family? After all, what seems empathetic to an observer might not meet the patient’s definition of empathetic. On the other hand, there’s no one-size-fits-all approach to the art and skill of delivering bad news, so how do doctors learn to tailor what they say and how they say it without unintentionally giving offense?

Medical students might learn a lot from patients and families about giving bad news – what makes the situation worse, what makes it better. If we need a better balance between real-life training opportunities for students vs. allowing difficult conversations to belong to the patient and family, why not invite patients into the education process instead of debating their obligation to do so?

Competing our way to better health

Reactions to the finale of the latest season of “The Biggest Loser” seem to fall into two general categories:

1) Rachel Frederickson, who shed more than half of her body weight to win the competition and take home $250,000, looks fabulous and deserved the prize for her hard work.

2) Rachel lost too much weight too rapidly and is a prime example of everything that’s toxic about how Americans view food behavior and entertainment.

Amid all the chatter, not to mention the snark, that has swirled around the show for the past several days, there’s one point that seems worthy of extended, thoughtful public discussion: What are the ethics of creating competition around people’s health?

Treating individual health as fodder for a contest is by no means confined to “The Biggest Loser.” Corporate and community initiatives abound that pit individuals and teams against each other to see who can lose the most weight, walk the most steps, exercise the most hours and so on. The popularity of “The Biggest Loser” has spawned imitation contests in workplaces, neighborhoods and even churches.

What’s the harm, as long as it helps motivate people to change their behavior? Well, not so fast.

The competitive approach may be successful for some, and it may inspire many on-the-fencers to become more engaged. For a story last year on corporate wellness trends, the Washington Post talked to an office worker from Maryland who joined a corporate fitness challenge and lost 42 pounds. “There’s sort of like a peer pressure and a competitiveness to it,” Sal Alvarez told the Post, adding that he found it very motivating.

Not everyone responds well to competition, however, and some people may even find it alienating, especially if they feel coerced to participate.

Although there are plenty of positive stories about how wellness challenges have helped people change their lives, there’s surprisingly little solid evidence of competition’s overall effectiveness as a health improvement strategy. More importantly, it’s not clear whether competition leads to behavior change that’s sustained after the contest is over.

Then there’s the matter of prizes. Are people motivated by the prospect of T-shirts, water bottles and gift cards? Do they need carrots to entice them to take action or is it better to emphasize good health as the reward? What if the carrot is really, really significant, such as the quarter of a million dollars dangled before the Biggest Loser contestants?

With that amount of money at stake, along with a chance to be on national TV and impress their family and friends, it shouldn’t be surprising that the participants in the show would become uber-competitive, possibly to the point of going overboard.

In a recent interview with People magazine, Rachel herself conceded that she “maybe” was “a little too enthusiastic in my training to get to the finale.”

Maybe competition is OK, as long as it helps people accomplish their health goals. Then again, maybe it exploits people’s vulnerabilities and propels them into doing something perhaps the wrong way or for the wrong reasons. Does the end justify the means? That’s the moral question that hasn’t really been answered.

5 things to think about before you pink

October is upon us, and the pink reminders that this is Breast Cancer Awareness Month seem more prolific than the autumn leaves scattering from the trees.

Here’s another reminder: Consumer beware. Just because a product is advertised with the familiar pink ribbon doesn’t mean your purchase is making a meaningful contribution on behalf of breast cancer research or charity.

From the Think Before You Pink website, here are five things to look for beyond the pink hype:

1. Will your purchase of a product actually result in a donation to the cause? The use of the pink ribbon symbol is unregulated. Some companies use it on their products to show support but their contributions aren’t tied to purchases of pink-ribbon products. In other cases, the consumer has to do something further, e.g. sending in labels or boxtops, before the donation is realized. Sometimes the company also caps its donations, yet continues to sell the product to consumers who are unaware that their purchases are no longer being used to support the cause.

2. Is the company transparent about how much it donates from its pink-ribbon proceeds?

3. Who gets the money? Pledges that your purchase will help support “programs” or “services” for women with breast cancer are vague. Statements that your purchase will help promote “awareness” of breast cancer are vaguer yet. Buyers who sincerely want to make a difference should know where their money is going and whether it’s going to a credible organization.

4. What will the money be used for? Will it be spent on services that directly benefit women with breast cancer? Will it make a dent in screening, treatment or prevention? Or is mostly being spent on administrative costs and marketing?

5. Are the company’s pink-ribbon products and promotions in line with your personal values? For instance, are you OK with pink “limited edition” bags of potato chips? How do you feel about Booze for Boobs pub crawls, an event that sprung up in some communities in the U.S. a couple of years ago? (The organizers seem to be unaware that excess alcohol consumption has been linked to an increased risk of breast cancer.) How do you feel about supporting the cause by buying pink-ribbon cosmetics that may contain potentially harmful chemicals?

Think Before You Pink, a project of Breast Cancer Action, offers this final advice: If it looks like your money will do little, if anything, to support breast cancer programs, or if the company isn’t transparent, reconsider and make a direct donation instead to the charity of your choice.

Showing skin: When medical photos get provocative

Picture, if you will, a magazine cover photo of a (presumably) unconscious and mostly nude female patient, one leg raised and the other sprawled sideways, being positioned for surgery by three men in scrubs.

Outpatient Surgery magazine published a photo exactly like this on its cover last month to accompany a story about safe surgical positioning, igniting a barrage of criticism from readers who felt the image was degrading, distasteful, insulting and offensive. (Click here to judge for yourself.)

What were the editors thinking? Nothing, apparently, if we’re to believe editor-in-chief Dan O’Connor, who pennedmea culpa of sorts this month, claiming the blowback “caught us by surprise.”

His rationale: “Anyone who’s been around surgery knows that patients are very frequently left much more exposed than the patient on our cover was.”

Really? Really?

Illustrations for medical articles and public health messages tend to be a sensitive subject. Remember the firestorm over Georgia’s Strong 4 Life childhood obesity campaign? Or the FDA’s failed attempt to add graphic photos to cigarette packages? Or the Minnesota Department of Health’s colonoscopy campaign featuring huge billboards of a backside with pants at half-mast? What one person sees as blunt, refreshing honesty can look to someone else like crass overkill.

Titillation as a sales tactic is nothing new either. But it’s arguably a whole different ethical proposition when this strategy is used to depict the care of patients who are vulnerable, forced to compromise their dignity and control and, in the case of surgery, unconscious and unaware of what’s being done to them.

For the record, the magazine cover photo didn’t strike me as “pornographic,” as one critic accused. But I’d call it deliberately provocative, perhaps even exploitive.

Why the choice of a female patient? Did the three people in scrubs all have to be men? Why her entire anatomy below the waist and not, say, an arm or shoulder? Why an obviously young and slender woman instead of a middle-aged man? And what was up with the double entendre in the tagline’s promise of “maximum exposure” to patient safety tips?

The article itself tackled a serious and important subject. Patients who are sedated, especially for lengthy surgeries, can be at significant risk of developing pressure ulcers that are painful, debilitating and costly to treat. Safe, proper positioning during surgery is one of the keys to avoiding this complication.

But never mind the fact that the patient demographic at greatest risk of pressure ulcers is older adults. Sex sells, so we get a cover photo of a shapely upraised leg instead of one that’s bony and arthritic. In the same manner we get images of mammography featuring one attractive semi-nude young woman after another, even though breast cancer is most prevalent in middle-aged and older women. With all that skin on display, the underlying message can become cheapened and sometimes ultimately lost.

I suppose you could argue that even when medical imagery is tarted up with firm young flesh, it at least has the benefit of depicting something real. After all, not everyone was unhappy with the surgery magazine’s choice of cover photo; one (female) surgical nurse told the editor she thought the patient “was covered appropriately.”

It begs the question, however: Appropriate according to whose definition – the patient or the OR staff?

Tellingly, no one spoke up to say the photo was inaccurate.

To give him his due, Mr. O’Connor recognizes that health care practices long regarded as standard may leave patients feeling exposed and compromised. He writes: “Well, here’s a thought. If we think patients would be uncomfortable with how we treat them when they are anesthetized, then is there something wrong with how we’re treating patients?”

Well, here’s a thought for you, Mr. O’Connor. Why don’t you ask patients themselves? I bet they’d have something to say.

But enough of my opinion. What do readers think?

5 health messages from Angelina Jolie

It’s been more than two weeks since actress Angelina Jolie revealed the bombshell story of her preventive double mastectomy, and I’m still trying to wrap my head around the implications.

This was a news item that was hard to miss, given the reaction and commentary it ignited. For those who’ve been out of the loop, here’s the story in a nutshell: Jolie went public with a New York Times essay on May 14, telling her story of recently undergoing a double mastectomy to lower her risk of developing breast cancer. Her mother died at age 56 of ovarian cancer and Jolie herself has the BRCA1 gene, heightening her chances of someday being diagnosed with breast and/or ovarian cancer.

“Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could,” Jolie wrote.

She explained that although the decision wasn’t easy, “I feel empowered that I made a strong choice that in no way diminishes my femininity.”

It’s a compelling personal story but the ensuing reactions made it clear there was much more to it than one woman’s choice. After a lot of reading, I saw these main issues that kept rising to the surface:

1. Genetic testing – helpful or not? Jolie urged women to get tested for the BRCA gene, especially if there’s a family history of breast and/or ovarian cancer. What’s left unsaid is that only about 1 percent of women in the U.S. have the BRCA1 or BRCA2 gene. To be sure, genetic testing could help these women weigh their options, but it may not be useful to the population as a whole. For women who test negative for the gene, it might even create a false sense of security, since the vast majority of breast and ovarian cancers are not tied to any obvious risk factors.

Nor is it enough to simply have access to genetic information; people also need guidance to help them make sense of the information and make decisions based on their own values and tolerance of risk.

2. Risk isn’t always perceived accurately. By undergoing a preventive mastectomy, Jolie was able to lower her risk of breast cancer from 87 percent to under 5 percent. But these numbers seem to mostly reflect the odds ratio, i.e. overall likelihood given a specific set of circumstances. They don’t necessarily indicate actual risk. Moreover, even a drastic measure such as a preventive bilateral mastectomy does not lower the risk to zero, nor does it lower the risk of developing other types of cancer.

3. Be careful of the anecdote. Personal stories resonate with people. Jolie put a human face on the ordeal of learning you have the BRCA gene and pre-emptively having both breasts removed. But this is one person’s story; the experience may be quite different for someone else.

Jolie writes that her surgery and breast reconstruction were complication-free. “The results can be beautiful,” she says. No doubt this is the case for some people but it glosses over the possibility of scarring, infection, repeat surgeries and all the other things that can make these procedures anything but beautiful.

4. Surgery to remove healthy body parts, even when heightened risk is present, is a drastic measure. Maybe this speaks to how Americans have been conditioned to fear breast cancer. Some of this fear may be justified. In spite of massive investment in research, treatment options remain limited for metastatic, or widespread, breast cancer. The fact remains, however, that it’s a very aggressive way to try to prevent disease.

Interestingly, studies going back at least a decade indicate that most women who undergo a preventive mastectomy are happy with their decision and feel less anxious about their risk for cancer. Unfortunately some of the public discussion about Jolie’s story has become muddled over the distinction between preventive mastectomy and mastectomy once cancer is diagnosed. These are two different things that cannot accurately be weighed on the same scale.

5. Individual medical decisions are exactly that – individual choices. I wouldn’t judge Angelina Jolie for her choice. Only she can determine what level of risk she’s willing to live with and what she’s willing to do to reduce that risk. For someone else, the decision might be entirely different.

The crux seems to be whether patients have accurate, realistic information and a good understanding of their personal values and preferences – a principal that applies in countless other health decisions, from whether to take a prescription drug to making end-of-life decisions. Maybe by sharing her story, Jolie has contributed to moving along a complicated conversation that needs to happen.

The ethics of medical job shadowing: Who benefits?

The patient was about to undergo surgery when the surgeon came into the hospital room with “a clan of about six ‘student doctors’.”

It was uncomfortable and embarrassing:

As the young students craned their necks to get better views of my condition, I remember feeling so overwhelmed and self-conscious that I didn’t voice any of the several concerns I had outlined to discuss with my surgeon. I’m ashamed to admit it, but I remained quiet as my surgeon prattled on about what he was going to do.

Now imagine the student doctors are high school or college-aged students who aren’t even in medical school yet but are job-shadowing a physician mentor to learn more about a possible career in medicine.

Does the discomfort level ratchet up even more?

Some intense online discussion erupted recently over the ethics of allowing students to observe patient care as part of the career exploration process.

Job shadowing is a time-honored way for teens and young adults to gain a firsthand look at what medicine is like so they can make informed, realistic choices about pursuing it as their life’s work,  writes Dr. Elizabeth Kitsis, director of bioethics education and assistant professor of medicine at Albert Einstein College of Medicine in New York.

But she admits to feeling uneasy about its impact on patients and on their care.

She wonders: Do patients know the “student” observer in the exam room might actually be a high school student? Are they allowed to ask the student to stay out of the room? What if they don’t want a student present but are too shy or intimidated to say so?

More to the point, does the presence of a high school or college student inhibit the discussion of sensitive medical issues? Maybe the patient won’t bring up worries about having contracted a sexually transmitted infection, or might give less than honest answers about alcohol consumption, Dr. Kitsis writes.

She asks: “Are these concerns outweighed by the benefit derived by premed students from being in the room? I suspect that students would respond in the affirmative. But I am not sure what patients would say.”

To help answer some of these questions, Dr. Kitsis and a colleague turned to the research to conduct a study of their own. What they found was a dearth of information on best practices in medical job shadowing, how to measure the effectiveness of such programs and how to address the ethical and practical considerations.

She and Dr. Michelle Goldsammler concluded that more research is needed, and they suggest the development of guidelines and a code of conduct for premedical students who want to shadow a practicing physician.

Judging from the online conversation, most medical students find it valuable indeed to shadow an experienced physician to gain an understanding of a career they’re seriously considering.

Jimmy Tam Huy Pham, a medical student, shadowed in several different settings before entering medical school. Most patients were OK with having him in the room, although many others declined, he wrote.

“The bottom line is: exposure to any aspects of medicine (and as much of it as possible) is crucial for an individual who is about to spend the next 8-11 years of their life (subsequent to high school) in a profession where repetitive exposure and practice to procedures and patient interaction are keys to learn,” he wrote.

“Patients were always asked whether or not they were happy to have me present and, of course, their wishes always respected,” someone else wrote. “Personally, I feel that shadowing was invaluable in helping me to decide that I do truly want to pursue a career in medicine.”

Several people pointed out that shadowing experience is an unofficial entrance requirement at many medical schools in both the U.S. and the U.K.

Many of the patients who joined the online discussion had a different perspective, though.

“A curious teenager in my exam room? Never,” was one person’s response.

Someone else wrote that she did not want “some kid who has nothing to do with my care tagging along with my doctor.” Nor did she want to be in the position of having to say yes or no to allowing a student in the room, she wrote. “Why should patients have to go through that? It’s not the patient’s responsibility to help young people figure out if they want to be doctors.”

Previous studies have found that a majority of patients are willing to accept the involvement of medical students in their care – and that many in fact find it rewarding to help contribute to a student’s education. But most of these studies concentrated on students who have already entered medical school and are able to bring training and commitment to their encounters with patients. Does it – or should it – make a difference when the student is still in the career exploration phase?

Society holds a stake in the training of future health care professionals. After all, today’s student is tomorrow’s doctor, nurse, physical therapist or physician assistant. But do patients have a moral obligation to participate in this process? And when they do participate, what can be done to help ensure it doesn’t compromise their care or their privacy? It would seem these are questions that need to be examined and satisfactorily answered.

Movember: just another gimmick?

Take a look at the guys around you this month and count how many of them are displaying more facial hair than usual.

Chalk it up to Movember, a global charity event that invites men to grow mustaches during November to raise awareness and money for men’s health. According to the website, the initiative had more than 854,000 participants – they’re known as “Mo Bros” – worldwide last year and raised $126 million on behalf of prostate and testicular cancer.

Well, fair enough. After all, the entire month of October is devoted to breast cancer awareness and fundraising and all things pink. Maybe it’s time men had their own health month.

But the critics are cautioning: Don’t be too quick to get behind this health campaign without asking more questions about what’s really being accomplished.

What is the substance behind the “awareness” the Movember campaign says it promotes? Take a look at the list of Movember health tips, which include a recommendation to get an annual physical: “Getting annual checkups, preventative screening tests and immunizations are among the most important things you can do to stay healthy.” Nary a mention is made of the debate surrounding the value of the yearly physical exam. Nor is there discussion about the risks vs. the benefits of prostate cancer screening, an issue that’s of considerable controversy amongst the medical and scientific community, or how men can weigh the evidence to make appropriate, informed decisions.

Another health checklist on the website advises men 40 and older to talk to their doctor about the use of aspirin and statins to lower their risk of heart disease, even though the preventive benefit of these two therapies has not been clearly established in people who don’t have existing heart disease.

Most would agree men are well served by education that gives them accurate, realistic information about their health. Are they served as well by information that’s overly simplified or that fails to adequately convey evidence-based pros and cons? Or by messages that confuse screening with prevention?

Perhaps the bigger issue is whether Movember, which started out with good intentions, is turning into a gimmick that allows people to feel good about a cause merely by growing a mustache and donating a few dollars.

Blogger Ashley Ashbee calls it “a type of slacktivism.”

“Does your moustache share information about the importance of screening, or where to get screened?” she wrote last year. “Does it tell you how you can prevent prostate cancer (if you even can)? Does it tell you the symptoms? Does it tell you who’s affected?”

Moreover, critics say one of the flaws of catchy public awareness campaigns, whether they’re exemplified by mustaches or by pink ribbons, is that they can skew the public’s perspective about risk and disease and lead to inaccurate or exaggerated beliefs that sometimes spill over into health-related behaviors. Although prostate cancer is far and away the most commonly diagnosed type of cancer among men in the United States, it’s actually lung cancer that is responsible for the most cancer deaths in men. Heart disease continues to be a significant health risk for men and, many would say, is the leading male health issue. Men also outnumber women when it comes to alcoholism, fatal traffic crashes and suicide.

To their credit, the Movember organizers added men’s mental health this year to their list of causes. But whether this helps improve the public’s understanding about male health remains to be seen.

The Toronto Globe and Mail spoke last week to medical ethicist Kerry Bowman of the University of Toronto, who lamented, “There’s not a direct relationship between the diseases we hear most about and either their occurrence in society or the lethality and the amount of suffering they create.”

Ideally, there should be a form of “ethical triage” that helps the public be better informed about the most widespread and urgent health care needs before donating their money to a cause, Bowman said. But for most fundraising campaigns, this kind of analysis is “very much lost,” he said.

A cancer hero, fallen from grace

Two days after the news of Lance Armstrong’s fall from grace, I’m still not sure what my reaction should be. Disappointment? Disgust? Outrage?

Probably all three.

Not because he cheated his way to the top of the competitive cycling world, all the while steadfastly denying the doping allegations that dogged him – first in whispers, then in shouts – for years. Bad enough as this was, the real moral offense lies elsewhere: in leading everyone to believe in his amazing recovery from cancer, in accomplishing victories that inspired so many of his fellow survivors, when apparently all along his feats were artificially enhanced.

Were those Tour de France performances the real Lance Armstrong, the guy who battled back from testicular cancer that had spread to his abdomen, lungs, lymph nodes and brain, the guy who at one point was given only a 40 percent chance of survival? Or was his incredible comeback helped along by performance-enhancing drugs?

We’ll never know for sure. And in all honesty, I feel sort of betrayed by one of my own, because Armstrong and I belong to the same tribe: young adults who were diagnosed with cancer (in fact Armstrong’s diagnosis came a year after I completed treatment for lymphoma), beat the disease and returned to normal life.

The difference is that I didn’t cheat to do it while pretending to the rest of the world that my recovery was entirely the product of my own motivation and endurance. If anything, my life – like that of all too many other cancer survivors – has never gone back to what it used to be.

Truth be told, Armstrong has been a bit polarizing among some within the cancer community – not because of the long-standing doubts about whether he was doping but because he set the recovery bar so high.

This isn’t meant to diminish his accomplishments. Even without winning seven Tour de France races in a row, Armstrong would have been inspiring for his post-cancer career as a world-class cyclist – not to mention the founding of Livestrong, his charitable foundation that has done so much to offer help, hope and community to people with cancer.

Many survivors don’t fare as well as Armstrong, however. That cancer and the treatments for it are often accompanied by long-lasting and even permanent effects is one of the dirty little secrets of CancerWorld. It has only been within the last decade or so that the health community has begun recognizing this and trying to address it.

How people recover seems to be, at least to some extent, an individual outcome. Armstrong may have been better equipped than most, due to his training, physical and mental conditioning and perhaps even a genetic edge, as some research has suggested. Other survivors might not; does it mean they’re doing it wrong or not trying hard enough if they fall short of Armstrong’s level?

Perhaps the real issue has nothing to do with alleged doping and everything to do with the hero narrative. Armstrong gave us a shining example of overcoming adversity that turned out to be flawed. Maybe the correct response here isn’t outrage but forgiveness for placing the unreasonably high expectation on him of being everyone’s perfect cancer survivor superhero.

Why can’t the heroes be the survivors quietly showing up every day, working, going to school, raising families and being part of their community? Why can’t it be heroic enough to simply persevere through chemo brain, fatigue, nerve damage and the rest of the long-term cancer baggage?

For what it’s worth, it comes as somewhat of a relief that Lance Armstrong may be fading as the image to aspire to. Maybe now we can go back to more realistic expectations that embrace the still-rich human potential of life after cancer while remaining honest about the limitations.