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Jean, an Arizona teacher whose employer provided group health benefits but did not contribute to the cost for family members, gave birth to her daughter, Alex, in 2004 and soon after applied for an individual policy to cover the baby. Due to time involved in the medical underwriting process, the baby was uninsured for about 2 weeks. A few months later, Jean noticed swelling around the baby’s face and eyes. A specialist diagnosed Alex with a rare congenital disorder that prematurely fused the bones of her skull. Surgery was needed immediately to avoid permanent brain damage. When Jean sought prior-authorization for the $90,000 procedure, the insurer said it would not be covered. Under Arizona law, any condition, including congenital conditions, that existed prior to the coverage effective date, could be considered a pre-existing condition under individual market policies. Alex’s policy excluded coverage for pre-existing conditions for one year. Jean appealed to the state insurance regulator who upheld the insurer’s exclusion as consistent with state law.
People hate Obamacare. People in “real” America really hate Obamacare. Kaiser Family Foundation convened a series of focus groups in counties that voted for Trump to find out what EXACTLY Trump voters hated about Obamacare (article found here). They hated that those that were really poor and on Medicaid didn’t have the same barriers to care (high co-pays and deductibles) as did those who were working hard. This was even when the groups included voters on Medicaid. They hated how expensive their premiums were, how high their co-pays were, and how much was not covered. They hated how complex the system is and how when you think you have it figured out someone throws another thing at you. They hated the mandate to purchase insurance.
There is currently a bill being formulated to “repeal” significant parts of the ACA and replace it either with a “To Be Named Later” or with a mismash of proposals which would be labeled “replacement.” How pre-existing conditions fit into this bill remains unclear but is worth understanding (Kaiser article here). Prior to the passage of the ACA, insurance companies were state regulated, and in all states were able to do medical underwriting, This meant that they could effectively eliminate people with preexisting conditions. Although it would be possible to repeal the ACA and keep in the current underwriting rules, it is not likely this will happen. In the case of our pre-Obamacare insurance at our work, the “lookback” was “270 days, known or unknown, manifest or unmanifest.” This meant that, the human gestation being 270 days from conception, if you had your first day of work and went home and celebrated with your significant other (and one thing lead to another) you had best hope the baby was a week late. If not, you were paying cash. Much worse was the patient we had whose cancer was manifest 4 months after his employment commenced and we got to tell him that he had to pay $100,000 up front or die of his cancer. Kaiser estimates that 52 million people will be denied coverage if the old rules are put back into place. Perhaps not denied outright but effectively denied by bringing back these old favorites:
- Rate-up – The applicant might be offered a policy with a surcharged premium (e.g. 150 percent of the standard rate premium that would be offered to someone in perfect health)
- Exclusion rider – Coverage for treatment of the specified condition might be excluded under the policy; alternatively, the body part or system affected by the specified condition could be excluded under the policy. Exclusion riders might be temporary (for a period of years) or permanent
- Increased deductible – The applicant might be offered a policy with a higher deductible than the one originally sought; the higher deductible might apply to all covered benefits or a condition-specific deductible might be applied
- Modified benefits – The applicant might be offered a policy with certain benefits limited or excluded, for example, a policy that does not include prescription drug coverage.
Some have suggested that a “high risk pool” would allow these folks to obtain coverage and keep the cost down for the 50% of the population who have no need to access the healthcare system in a given year. We actually tried that before, turns out. As the Kaiser article points out, these didn’t work for a number of reasons. First is the nature of health care expenses. Some folks have a lot of expense in a single year (car crash) and the next year are perfectly fine. Others have a lot of expense in an ongoing fashion for a very long time (think Magic Johnson and HIV).
Planning for these disparate situations was tough and no one got it right. The reasons for failure included:
- Premiums above standard non-group market rates – All cost a lot, the states with the most success provided a substantial subsidy.
- Pre-existing condition exclusions – Once again, how do you deal with folks who wait until they get sick to pick up a policy
- Lifetime and annual limits – Most ranged from $1 million to $2 million and others imposed annual dollar limits on specific benefits such as prescription drugs, mental health treatment, or rehabilitation.
- High deductibles – The plan options with the highest enrollment had deductibles of $1,000 or higher.
The conclusion was that they could work but it’ll cost a lot to get it right.
Back to the focus groups. What Trump voters said they wanted was low premiums and little out-of-pocket expense for drugs, visits, and procedures. They wanted no mandate and no increase in taxes but felt that not covering pre-existing conditions was “un-American.”
They expressed confidence that as a businessman President-elect Trump could pull this off. Hope they are correct.
Resident: This is an 85 year old woman who presented in sepsis from a multilobar pneumonia. Her temperature was 103.2 and she had a blood pressure of 100/60. Her chest x-ray showed pneumonia. Two hours after the antibiotics, she is up and around and wants to go home.
Resident: I know, based on the CURB-65 criteria her predicted mortality is about 50%
I give away a lot of advice, that people may or may not want. People come to me not for information regarding their disease but for a cure. They want to feel better. This is in part an residual of the miracles of the antibiotic age that I was a part of this weekend. Pneumonia, the “old man’s friend” is now, if treated efficiently and effectively, almost always curable as attested to by my patient form this weekend. The proliferation of “urgent care”s and “immediate care”s is partly because people want to feel better immediately (it isn’t Dr. Perkins I need, it is a prescription and a steroid shot) and partly they don’t want to miss a pneumonia and die (it isn’t pneumonia, is it?).
The antibiotic model is that it works great for pneumonia in old people in part because the outcome is so dramatic. The older person is still old but the pneumonia is now gone. It is a lousy model for chronic illness. Take insulin for 4 days for your diabetes and you still have to take it the 5th day. And the 365th day for that matter. Unlike the pneumonia, which if untreated will kill you quickly, the high blood sugar of diabetes rarely kills. It is the aftereffects, the sequelae, of diabetes that kills with heart disease, stroke, infection, and blindness.
The New York Times covered a science story regarding the differences in premature mortality between the rich and the poor (found here). In it they point out that the differences can be explained by smoking (the poor are much more likely to smoke, now) and prescription narcotic abuse (just because it came with a prescription doesn’t mean it is safe). The third contributor is obesity. The rich are less likely to be obese than the poor, but not that much less (31% vs 37%), so why is obesity more of a problem for them? The investigators didn’t know why, exactly.
We had another patient this weekend who was admitted for her diabetes that explains why obesity isn’t so bad for the poor but the sequelae of obesity is. Her diabetes is well controlled when she has her insulin. Her job provides her insurance. Unfortunately her job doesn’t pay enough to cover the copay for the insulin, her grocery bill, and her housing expenses. So often, she has to make a choice between food and insulin, especially if her job doesn’t give her enough hours. So it isn’t the obesity per se. It really isn’t the diabetes, per se. It is the need to choose between a warm place to stay, food for her family, or her insulin that forces her to neglect herself. The sequelae of being poor in America.
From the New York Times:
A sweeping national effort to extend health coverage to millions of Americans will leave out two-thirds of the poor blacks and single mothers and more than half of the low-wage workers who do not have insurance, the very kinds of people that the program was intended to help, according to an analysis of census data by The New York Times.
Their analysis reveals that the 26 states that have rejected the expansion have several things in common:
1) The governors are members of the Republican party.
2) Although they are home to roughly half of the population, they are home to about 68% of America’s single mothers and poor, uninsured blacks.
3) About 60% of the working poor live in these states and will not be covered by Medicaid expansion.
4) In some other states, these folks would have potentially been covered by Medicaid without the expansion but in many of the opting-out states, the requirements are more stringent. For example, in Alabama income at all disqualifies a family with no children. In other words, the working poor in Alabama are one 2 day hospital stay from bankruptcy without the expansion.
Although Alabama was not highlighted in the Times article (instead focusing on our neighbor to the west), our situation is very similar. Wilcox County (featured in this video) is located in the Black Belt region of Alabama and one of the 15 poorest counties in America. 49% of Wilcoxians live below the poverty line and the median household income is $21,000. There are 4 doctors in Wilcox County, or one for every 4500 people. The County happens to be 71% black.
Had the NYT bothered to Google, we Alabamians did some of the Times’ work for them in a 2010 report entitled Alabama Health Disparities Report,
From the report:
Rural Alabama has got problems when compared to urban Alabama:
- Eight rural Alabama counties do not have hospitals.
- Thirty five of 55 rural Alabama counties do not provide labor and delivery service.
- The average time from call to arrival at the scene of an emergency for rural county emergency medical services is over 27 percent greater than the response in urban counties.
- The motor vehicle accident mortality rate in 2005-2007 for rural Alabama residents was nearly 46 percent higher than that for urban county residents and was more than double the rate for the nation.
- Hospitals in rural Alabama counties had 25.1 general hospital beds per 10,000 residents in 2009 compared to 45.0 general hospital beds per 10,000 residents in urban counties.
- The potential number of patients for each rural Alabama dentist in 2007 was approximately 3,845 compared to 1,774 for those practicing in urban counties.
Black Alabama when compared to white Alabama has problems as well:
- From 1997-2006, African American men (59.3 per 100,000) had a 14.7 percent higher colorectal cancer incidence rate than White men (51.7 per 100,000) and though both groups showed decreases, white deaths decreased much more than blacks from 2000 to 2008.
- Nationally, Alabama has the fourth highest death rate from heart disease and the seventh highest from stroke. In 2008, CVD accounted for 25.4 percent of all deaths, down from 28.6 percent in 2002 with the rate in blacks 18% higher in 2000 and 24% higher in 2008 when compared to whites (despite smoking less)
- For stroke in Alabama, in 2008, black males showed the highest stroke death rate of 58.0 per 100,000 population
- The diabetes mortality rate for Whites was 25.4 per 100,000. The diabetes mortality rate for African Americans was approximately 43.3 per 100,000, 70 percent higher than the White rate. The prevalence of diabetes among African Americans is higher than the prevalence of diabetes among Whites within every age group.
The New York Times article goes on to speculate regarding the motives of the states who are choosing not to expand:
The disproportionate impact on poor blacks introduces the prickly issue of race into the already politically charged atmosphere around the health care law. Race was rarely, if ever, mentioned in the state-level debates about the Medicaid expansion. But the issue courses just below the surface, civil rights leaders say, pointing to the pattern of exclusion.
In a speech entitled The Enduring Causes of Poverty in the Black Belt, Andrew Zekeri points out that a large concentration of already poor African Americans, many living in families headed by a single female, a lack of existing educational and health care infrastructure, and a global market that is unforgiving have combined to create a region that is noteworthy for enduring poverty.
The Medicaid expansion found in the Affordable Care Act offers a way out of poverty folks in this region. By giving coverage to the 15% uninsured, it provides revenue for hospitals and doctors caring for the folks when they get sick anyway. Access to health care PRIOR to conception predicts healthy pregnancy outcome and helps women avoid unplanned pregnancies. Creating a health care revenue stream allows for the stabilization of the health care infrastructure. Lastly, the global marketplace (“Job Creators”) will not locate in areas lacking health care infrastructure.
Looking at the New York Times map of the census tracts that would benefit the most from the Medicaid expansion, it seems to overlay pretty well with the poor counties found in our Black Belt. Although only 13% of Alabama’s population, it is the home to 307,000 blacks. or about 30% of the state’s African American population. What an opportunity our Governor has to show that this isn’t about race.
(Cut to bishop and vicars at doorway.)
Bishop: The text, Vic! Don’t say the text!
(Cut back to vicar.)
First Vicar: Leviticus 3-14. . .
(The pulpit explodes. Vicar disappears in smoke, flying up into the air. Cut to close-up of the bishop. Behind him there is smoke and people rushing about. Sound of people scrambling over pews in panic etc.)
Bishop: We was too late. The Reverend Grundy bit the ceiling.
Monty Pythons Flying Circus Episode 17
A recent article in Slate (found here) and a less recent article in the New York Times (found here) outlined the problems associated with the annual physical. The problems are many, with the Canadians recommending dropping a physicians visit for those not suffering from an illness since the 1970s. That’s the Canadians, you say, we Americans deserve to stay healthier and deserve more and better care. Unfortunately, we often don’t even get the care we need.
The problems begin with the concept. There is no template for these visits so often the patient is given what the physician learned in residency as a “check-up.” Only half of check-ups incorporate the evidence based recommendations as outlined by the US Preventive Services task force. In addition, 80% of things that are recommended are arranged outside of the asymptomatic visit. Another reason the physical may be outdated is that the recommendations over the years for those who are without symptoms have become less and less. Annual PAP Smear? Try every 5 years. Annual stress test looking for silent, atypical heart disease? Been shown to actually cause harm.
If we are going to discourage people from coming in when they are healthy, how are they going to stay well? Doctors are being measured on how many of their patients get this care. How are we going to get these folks screened for colon cancer?
First, we physicians need to get over the fact that we must control the means of production for all things medical. The Affordable Care Act assures access to evidence based preventive services without out-of-pocket expense. We need to improve access for healthy people to these services and reduce barriers. We shouldn’t make people come in for a physical exam when they need a FIT test.
Second, we need to provide better outreach to patients who are not highly motivated to seek out preventive care on their own. The “check-up” at best captures those who want to be “check-upped.” We now have the ability to provide outreach to those who need gentle (and not so gentle) reminders.
Lastly, insurance companies need to pay for the right thing to happen. If I do one bad physical, I get paid real money. If I call 10 people and remind them to get a needed mammogram, I get nothing. The right thing needs to get paid for as well.
Why do physicals not work? Perhaps the consequences are too small. If I do a poor physical the patient gets false reassurance, I get paid, and the insurance company (under the current rules) is none the wiser. If explosives were involved, the outcomes might end up being different,
My training was interrupted by my military service. As the saying goes, don’t cry for me. I knew I would have to leave my training program in Internal Medicine after the first year because the Navy pretty much insisted that all of us “go to the fleet” before beginning our second year. A buddy of mine and I, after looking into where the jobs might be, elected to enter into the Submarine Navy and became Diving Medical Officers and eventually Qualified in Submarines. I ended up completing my military career (the last 3 years of my 5 year commitment) in a half time clinical-half time diving billet (military for a job) in Kaneohe, Hawaii. This happened to occur during Desert Storm so I proudly tell people who don’t know me very well that 40 years after my dad’s generation I successfully helped keep Pearl Harbor from falling to the Iraqis.
When I arrived in Kaneohe, I found out that half of my time was to be spent providing primary care, mostly to the wives and children of the Marines. I was given two exam rooms, an office, and a prescription pad. I quickly found I was suited for the job, able to see the relatively healthy patients in the 20 minutes allocated efficiently and provide care that was appreciated (based on the satisfaction surveys, at least). I also learned a lot about myself.
I knew I was only there for 3 years and would have to find residency to complete if I wanted to move from the Navy into the “real world.” I had completed a year of Internal Medicine, so strongly considered completing the final two years of this residency. The nurses I worked with urged me to consider Family Medicine (my ultimate specialty choice) because of my winning personality. On a busy day I would end up seeing about 24 patients. At the end of those days, my feet hurt. Moving from room to room in regulation Navy shoes was hard on the arches. In our clinic we had an x-ray machine that we could use every day but only had a radiologist once a week. This was before electrons could be sent all over the world so we had to read out own x-rays 4 out of 5 days. On the day the radiologist was there, he would “over-read” the films and if I missed something I would have to call the patient and explain that I needed the patient to return for another film, go to the Army Hospital for ongoing care, or find out if they had died from my miss. I became quite good at reading films and on those days my feet hurt would think to myself, “If I were a radiologist, I would get $75 a film for showing up once a week, sitting down in a chair in a dark room, and second guessing the primary care doc.”
I thought about those days this past week-end as I was speaking about a career in Family Medicine to 33 medical students at the Alabama Academy of Family Medicine. These were medical students who want to be someone’s doctor. They asked me very good questions and indulged me by listening to my Kaneohe stories. Though my feet sometimes still hurt at the end of a full day of patient care (I wear much more comfortable shoes now) I was able to recommend the specialty without reservation. Not only are they going to be much more in demand than their radiology colleagues (see this New York Times article for details) but their care will result in a measurable improvement in the health of Alabamians. My advice to them was to wear comfortable shoes.
I just finished reading The Celestial Society, a biography of George Burch written by his daughter Vivian. I knew him as an older attending who seemed oddly out of touch with students. I now know that he was a beaten, sick man at the time I had contact with him. I also found out that he never deviated from his core belief that what medical schools needed to do was train good generalist physicians and develop tools to allow these generalists to become better doctors. He was Chairman of Medicine at Tulane for 30 years, forced out in the 1970s when he opposed the creation of a practice plan to capture faculty patient care revenues. The dean and the chancellor both felt that without the ability to harness this revenue source, Tulane would be forced to shut down.
It is amazing how much medicine changed in the 40 years of Dr Burch’s career. Dr Burch’s entire career was at Tulane and spanned from the 1920s to the mid 1980s. When he started the EKG “machine” was a string galvanometer and was only done on selected patients. He was instrumental in describing variants of EKGs, wrote the first book on interpretation which made the technology available to all clinicians and developed the circuitry which allowed all 12 leads to be measured simultaneously. All the while he was on faculty at Tulane, making very little money when compared to his private practice colleagues and caring for poor patients at Charity Hospital. To him the academic “life of the mind” and the noble activity of caring for the poor sick should have been rewarded by society. The building of a University Hospital with the corresponding contractually obligated faculty sounded the death knell for this type of medical practice.
The conflict at Tulane was the result of Dr Burch’s stature in the world of Cardiology and the perception that his belief regarding cardiac surgery were holding up progress. He believed that outcomes were terrible. His perception was that patients were more likely to die from the surgery than the disease, a belief grounded in observation but since surgeons kept no data not measurable. He believed that surgeons were uneven at best (again, unmeasurable) and in reality it was the post-surgical care that mattered the most. He abhorred the “chance to cut is a chance to cure” mentality and in his clinical experience many people would be better served to have nothing done than to subject themselves to angioplasty or surgery. Tulane wanted him to refer his patients exclusively to Tulane surgeons and likely expected a larger number of patients to be referred, conditions to which he was unwilling to agree. Medicine was moving into an entrepreneurial direction and Dr Burch was being left behind.
Dr Burch died in 1986. Tulane continues to thrive (at least according to the alumni magazine) despite not being in Charity Hospital at all. Many of his beliefs regarding invasive cardiology have been affirmed. Meanwhile, the article on colonoscopy in today’s New York Times, illustrates the cost we have paid for dismissing Dr Burch’s warnings regarding our abandonment of the generalist physician model and embrace of the entrepreneurial model of medicine.
The high price paid for colonoscopies mostly results not from top-notch patient care, according to interviews with health care experts and economists, but from business plans seeking to maximize revenue; haggling between hospitals and insurers that have no relation to the actual costs of performing the procedure; and lobbying, marketing and turf battles among specialists that increase patient fees….
When popularized in the 1980s, outpatient surgical centers were hailed as a cost-saving innovation because they cut down on expensive hospital stays for minor operations likeknee arthroscopy. But the cost savings have been offset as procedures once done in a doctor’s office have filled up the centers, and bills have multiplied.
It is a lucrative migration. The Long Island center was set up with the help of a company based in Pennsylvania called Physicians Endoscopy. On its Web site, the business tells prospective physician partners that they can look forward to “distributions averaging over $1.4 million a year to all owners,” “typically 100 percent return on capital investment within 18 months” and “a return on investment of 500 percent to 2,000 percent over the initial seven years.”
To quote Chairman George, “I’m not antisurgery, I’m pro-patient.”
Me, as a first year resident on a healthcare team, developing a treatment plan for a patient with a cancer that will be almost certainly terminal: Why can’t we just stop the treatments and let the disease take its course?
Attending physician: Because that is not why we are here. We give patients hope.
Me: But for this cancer there have been no reported cases of survival
Attending: Then our patient will be the first.
The patient lapsed into a coma and died five days later, after chemotherapy and multiple interventions failed to stave off the inevitable.
Physicians hold all the illness cards. They know what might happen with or without intervention. They are expected to “do the right thing.” In my last post (found here) I pointed out that people tend to make good choices, all things being equal (here is the mathematical treatment of this concept). The problem is. all things can never be equal:
What’s the worst thing that asymmetry of information can lead to? Basically, it’s fraud. Potentially, doctors (and other providers) can induce us to get care we don’t need — even risking our lives in the process. They can claim they have skills they really don’t have. They can bill us for services we never received. And make other “billing mistakes” that line their pockets at our expense.
In the vast majority of cases, physicians are not intent on committing fraud. They are, however, working within a system that offers little opportunity to advocate for the right thing to happen every time. From an essay published in the New York Times this past week about cancer care:
Many cancer patients, after getting a diagnosis of a terrifying disease, pursue any potentially promising therapy, regardless of the price. But the main cost driver is the fee-for-service payment system. The more doctors do for patients, the more reimbursement they receive. Surgeons earn more for every procedure. Oncologists typically make more money if they use newly approved drugs and the latest radiation treatments than if they use cheaper, older alternatives that work just as well. (This is because they get paid back the cost of the drug, in addition to an extra 6 percent of that cost — the more expensive the drug, the higher the compensation.)
20 cancer doctors from nationally known programs asked for the following to happen:
- Move payments from fee-for-service toward a system of bundled payments, in which doctors are paid one fee for all the treatments involved in caring for a cancer patient. Currently physicians get paid more the more charges they rack up.
- Require insurers to give physicians information about where the physicians are spending money. They don’t know the consequences of their actions
- Accompany payment changes with rigorous quality monitoring to ensure that there is neither under- nor over-utilization of care.
- Create more “high touch” oncology practices.
- Develop better incentives for research that evaluates care over time after the technology is approved.
In the case of my patient, I had neither the training nor the seasoning to advocate harder for less aggressive care, allowing the inevitable patient death with minimal discomfort, in the face of a patient’s family that “wanted everything done” and an attending who considered no amount of care to be too aggressive. It is still unclear how much the payment structure clouds physicians beliefs regarding needed care, much less how it affects the delivery of the message to the patient. What is clear is that the payment structure has been awfully good to physicians and patients tend to follow their physician’s advice. Since I am paid on salary, I often find myself being the voice of reason which may be why I stick around.
Victor Fuchs, the health economist, has an essay in a recent New England Journal of Medicine regarding health care rationing. Dr Fuchs has been writing and thinking about health care for a long time. If you are unfamiliar with his work, here are some quotes from an interview in 2000:
When asked how Americans will respond to health reform –
Two-thirds of the American people say they favor universal coverage, but the minute you start to spell out what that means — subsidization for the people who are poor and who are sick, and that the plan has to be compulsory — they are less supportive
When asked what is driving up the cost of health care –
The principle factor by far is medical innovations like new drugs, new surgical procedures and new diagnostic techniques. This is [confirmed by other] health economists in the country.
When asked if more medical care would make us more healthy –
I’m saying that almost everyone is getting the medical care that matters to health. Adding more care does not make much difference. The stuff that’s really effective, the antibiotics, the appendectomies and so forth — people get them. Health depends much more on the things we do to and for ourselves or that we don’t do. It depends on cigarette smoking, it depends on obesity, it depends on certain environmental conditions.
When asked what should we do to improve our health –
Improved health will come about through changes in the physical and psychosocial environments and in individual behavior and in medical advances, not in increasing the quantity of medical care at a given point in time.
In the recent New England Journal essay, Dr Fuchs identifies the payment structure as a significant barrier to reducing health care costs
The context… will affect the physician’s choice. If the physician is paid on a fee-for-service basis and the patient has open-ended insurance, the scales are tipped in favor of doing as much as possible and against limiting interventions to those that are cost-effective. In that setting, who would benefit from the resources that are saved by practicing cost-effective medicine is not obvious to the physician.
He believes that changing the payment structure to create an environment where the physician is responsible for the totality of care of a defined population will cause the physician to make better decisions based on a different frame of reference. He also believes that the patient will more readily accept physicians decisions not to recommend marginally effective care based on a “group good” in this context. Being in it together will help us to reduce both supply (from the doctors side) and demand (from the patients). There are several components of the Affordable Care Act including the Accountable Care Organization vehicle that use this strategy to reduce health care costs.
There is one other problem…who picks which group of people are in the health care lifeboat together? In doing some research on another topic, I came across this quote taken from a 1968 interview with a Mobile landlord regarding his plan to move his rental housing to an unincorporated area rather than offer city services (garbage pick up, sewerage and running water) to his (African-American) tenants:
“These people don’t mind,” he said. “You know, that’s the way with niggers. They’ll be happy in a community–everybody together. They try and go back to African tribal life. He don’t need garbage service–a darkie will feed it to his pigs. He don’t need a bathtub–he’d probably store food in it. Wouldn’t know how to use it.”
Granted, it was a different time. In conversations I have had with people both in and out of healthcare, though, I am concerned that we are still not certain that our neighbors are all striving for the same healthcare goals that we are. In the last 60 years we have come to realize that everyone likes to feel clean, regardless of skin color. How long will it take for us to believe that everyone wants to be healthy.
I recently wrote about the US Preventive Services Task Force decision to not recommend screening asymptomatic men for prostate cancer.There is heated discussion in the lay press, blogosphere, and scientific world regarding this report. The discussants offer strong statistical evidence on one side showing no improvement in the health of America as a consequence of screening. The opposing argument goes this way:
Tom Denhart was a father, husband, grandfather, friend, artist, advocate and patient.
On April 12 2009, he lost his 14 year battle with prostate cancer.
The following is my family’s story of discovery and loss. As I’ve learned, this experience is not uncommon when it comes to men and prostate cancer. It doesn’t have to be this way.
An underlying problems is one of terminology. The New York Times ran a well written essay recently entitled “Cancer by any other name.” In it the essayists discusses the use of the term cancer in clinical medicine and everyday life.
The idea of cancer as a progressive disease that will kill if the cells are not destroyed dates to the 19th century, said Dr. Otis Brawley, chief scientific and medical officer at the American Cancer Society. A German pathologist, Rudolph Virchow, examined tissue taken at autopsy from people who had died of their cancers, looking at the cells under a light microscope and drawing pictures of what he saw.
Virchow was a spectacular artist, and he ended up being the first to describe a variety of cancers — leukemia, breast cancer, colon cancer, lung cancer.
Of course, his patients were dead. So when he noted that aberrant-looking cells will kill, it made sense. The deranged cells were cancers, and cancers were fatal.
Dr Halstead, the father of the radical mastectomy, further developed the idea that cancer needed to be radically excised to be cured, an attitude that persisted for almost 100 years:
Whereas earlier surgeons would remove the breast, axilla nodes, and pectoralis muscle, that was not enough for Halstead. He knew that cancer was a cellular disease and worried about his own role in spreading it. He argued that lifting away the excised breast with surgeon hands probably scattered tumor cells. This led him to call for a radical mastectomy—removal of the breast, axillary nodes, and both chest muscles in a single en bloc procedure. He would cut widely around the tumor, removing all the tissue in one piece.
This aggressiveness was felt to be important in the cure of cancer by those who taught me. The essayist in the New York Times points out that such aggressiveness does not benefit patients with low grade tumors of the breast, prostate, and cervix, the kind often found by screening:
…one thing is growing increasingly clear to many researchers: The word “cancer” is out of date, and all too often it can be unnecessarily frightening.
Folks who make policy regarding cervical cancer screening through the use of the PAP smear have quietly moved in a different direction:.
Gynecologic pathologists addressed this issue with regard to cervical carcinoma in-situ in 1988 and developed the “intraepithelial neoplasia” terminology that eliminates the word “carcinoma” from these in-situ lesions.
More recently, a distinguished group of prostate cancer investigators made a similar recommendation:
Because of the very favorable prognosis of low-risk prostate cancer, strong consideration should be given to removing the anxiety-provoking term “cancer” for this condition.
These thoughts are not original. The scientist for whom prostate cancer staging is named suggested several years ago that the lowest state should be called adenosis. Keven Pho of KevinMD suggests that even with a name change, those of us opposed to aggressive approaches to not-so-aggressive tumors need to not only rely on statistics (which prove the correctness of our beliefs). In addition we need to focus on compelling stories that illustrate the consequences of calling something cancer when it isn’t. There are many such stories such as the following from the New York Times:
Brawley (a physician scientist) tells the story of a patient who had surgery and then underwent radiation, which left him with severe damage to both his rectum and ureter. “He had every side effect known to man,” Brawley says. “He had a bag for urine, a bag for stool, he was a terrible mess, in and out of the hospital with infections.” The man died six years after his surgery, from an overwhelming infection. Yet cancer statistics would list such a man as a success story, Brawley says, “because he survived past the five-year mark.”
In fairness, aggressive treatment is very effective for certain cancers. We need to work harder to distinguish patients who will benefit from aggressive treatment from those who will suffer harm without receiving any benefit. Apparently patients with low grade prostate and breast cancers fall into the latter category. How many stories do we really need for the right thing to happen?
When I was growing up, my parents had a subscription to Reader’s Digest. If you are unfamiliar with the publication, it is put out monthly and offered (and may still offer) 31 articles which rumor had it were written to be of such length that the average American could read an article in the time he or she spent daily in the restroom. Although the beginning of my interest in medicine is hard to pin down, it may have begun with the Reader’s Digest’s Joe and Jane series.
The most popular series ever published, over 7,000,000 reprints were sold (imagine that, paying for an article!). The one I recall most vividly is the one about Joe’s prostate. It may be that the beginning of the article made a big impression on me:
I am one of the hot spots in Joe’s body, a design nightmare for which Nature should hang her head. Red-brown, about the size of an English walnut, I produce a variety of grief. I can disturb Joe’s sleep by requiring several trips to the bathroom each night–or kill him with uremic poisoning. If Joe lives long enough, I will become a cancer site far surpassing the lungs in importance.
Or it may have been the fear of growing old (and the risk of the examining finger) that this article instilled me with:
Most important, Joe should have a rectal examination once or twice a year. This takes only a minute during yearly physical examination and is about the only way to find prostate cancer early enough for a surgical cure. If there doctors examining finger discovers a hard, button-size nodule in my otherwise soft rubbery tissue, he considers it cancer until he has proved otherwise.
This article was initially printed in the 1970’s. At the time man had finally made it to the moon and if you could do that then how difficult could a cure for prostate cancer be? It turns out, very difficult. The medical profession has never developed a satisfactory method of early detection and treatment for cancer of the prostate. The strategy of frequent digital rectal exams that traumatized me as a pre-teen never panned out. An enzyme (PSA) was discovered to be higher in some with prostate cancer than in those without prostate cancer and for the past two decades optimism reigned in the “we’re gonna beat this cancer” camp to contrast with the pessimism of the “screening leads to unnecessary tests that don’t help people to live longer” camp. Interspersed were celebrity testimonials from people who were not dead of prostate cancer such as Bob Dole and Robert Goulet.
Prostate cancer screening was once again in the news this week. The US Preventive Services Task Force has changed their recommendation from an I (insufficient information to recommend for or against screening in an asymptomatic population) to a D recommendation (screening not recommended because the patient will more likely be harmed that helped by screening). The task force took two years to issue the recommendation because, in the words of the leader:
“I looked at this and said, ‘I know [controversy] is going to happen with prostate cancer for all the same reasons [as breast cancer], and we absolutely have to have the science right,’ ” he said. As for the resulting delay, Dr. LeFevre said, “I will take full blame and full credit.”
Urologists feel very strongly that they are in the right:
“All of us take extraordinary issue with both the methodology and conclusion of that report,” said Dr. Deepak Kapoor, chairman and chief executive of Integrated Medical Professionals, a group that includes the nation’s largest urology practice. “We will not allow patients to die, which is what will happen if this recommendation is accepted.”
Ultimately,we need to away move from a very expensive but not very effective health care system.I suspect prostate cancer screening is one of the expenses we will need to do without as perhaps other types of cancer screening as well (as written about here). The USPSTF is an amazing resource that will allow for an impartial review of the data with a recommendation based on fact and not emotion. Unfortunately, when it comes to the prostate, emotion seems to rule.