More on mammography: just because you don't like the results doesn't make research junk science

A recent study published in the New England Journal of Medicine, “Effect of three decades of screening mammography on breast-cancer incidence”, by Archie Bleyer and H. Gilbert Welch[1], has generated enormous controversy. This has been caused by a combination of the study’s findings, the interpretation of them by the popular press, and the reactions of those who have a vested interest in the status quo – a combination that regularly occurs any time anyone publishes any research questioning the current conduct of screening or treatment for breast cancer (see, for example, my blog post Breast cancer screening: conflicting evidence? what are the important questions for health?, October 30, 2010). It happens in other areas, also, but breast cancer is the most common and in some sense most personal of cancers for women, and has a huge advocacy community, as well as powerful groups who profit from both treating it and screening for it.

What did the study show, what does it mean to people, what is the implication for cancer screening and most important, for the health of people (overwhelmingly women) who might get breast cancer? Before addressing these questions, I think it might be helpful to review a little about screening tests, cancer, and people’s hopes and beliefs. People want to not get sick, and especially don’t want to get cancer. If they do get it, they want to be treated and get all better. Of course, despite the use of “cancer” as if it were a single disease, and the existence of organizations such as the American Cancer Society, the federal National Cancer Institute, and the many Cancer Institutes, hospitals, and specialists, it is in fact a variety of diseases that all share certain characteristics but differ in many others. These include commonness, severity, cause, and likelihood of progression or death with or without treatment. Known causes for some cancers include smoking, radiation and viruses, and for many (including most breast cancer) the cause is unknown. It is even more complicated, because just naming the organ affected (breast, lung colon) is not all there is to it, as there are different kinds of cancer that affect the same organ. Whew. This is why the idea of “a cure for cancer” is unlikely; there are cures for some, and may be cures for others in the future, but there is unlikely to be “a” cure.

Some cancers, like breast cancer, are common enough, and well-publicized enough, that women realize that there is a real risk. In that case, the hope is that there exists a screening test that can identify it early enough to intervene and make a positive difference in the outcome. The first thing is that screening tests, by definition, are only for people who have no symptoms of a disease; once they do, a test, even if it is the same test, is no longer “screening” because the probability of the disease is greater in people with a symptom. For example, if one has a lump in the breast, a mammogram may be a good diagnostic test, but it is no longer a screening test. In looking at the criteria for a good screening test, there must be:

1)      A disease a test can screen for (while this seems obvious, doctors still do tests in asymptomatic people that do not effectively screen for any disease),
2)      A reasonable sensitivity and specificity to the test (meaning people with disease are more likely to have a positive test and those without the disease to have a negative test),
3)      A test that is reasonably cheap and acceptable to patients (tests like mammography and colonoscopy, for example, are both more expensive and more uncomfortable than, say, a blood test),
4)      A more definitive test available to say more definitely whether people who screen positive actually have the disease (for most screening, although those who screen positive are more likely to have the disease than those who do not, the majority of those who screen positive still may not have the disease),
5)      An intervention that can be done in the asymptomatic stage that will prevent the disease from progressing (or else, why not wait until it is symptomatic?)

So how does mammography stack up? This is a big part of what is addressed by the Bleyer and Welch study. They have looked at 30 years of screening in the US and found that screening mammograms have uncovered a large number of early-stage breast cancers; in fact, over that time, the number of early-stage breast cancers identified has doubled (from 112 to 234 cases per 100,000 women per year). This is a good – particularly if criterion #5, above, is met – and they can be treated and prevent women from dying or suffering serious morbidity. If this is happening, then (assuming the actual rate of cancer stays the same) the number of cancers diagnosed in later stages, where intervention is less successful, should go down. That is, those cancers detected early and treated would not progress and should mean that many fewer women present with later stage cancer.  Unfortunately, this study demonstrates, that has not occurred. The decrease in late-stage cancer diagnosis has been about 8%, or 8 per 100,000 women per year. So, for every 100,000 women, we are diagnosing an additional 122 early stage cancers, but only decreasing the number of late stage cancers by 8. This means that most of the additional women found by mammography to have early stage breast cancer would not have progressed to late-stage cancer. This, then, leads to their assertion that cancer was over-diagnosed – in 70,000 women in 2008 alone. Any estimate of the number of lives saved by screening and early intervention is inflated if it includes large numbers of women whose cancers would not have progressed. In other words, many of these women diagnosed with cancer, many of whom had non-trivial interventions (surgery, radiation chemotherapy) had cancers that would, basically, have not required any treatment.

Some radiologists who do mammograms have said that this is “junk science” (“Study links mammograms to overtreatment”, Boston Globe, November 21, 2012), but it is clearly not; the findings are the findings. The implications, however, are harder to assess. Does this mean women should not get mammograms? No, certainly that would be a premature conclusion. Some of the women diagnosed with early stage breast cancer would have gone on to develop late stage cancer; if you are one of the 8, you are lucky to have been found; if one of the 114, maybe not, especially if you had to endure the potential harms of chemotherapy or radiation or both, not to mention mastectomy. It may suggest that aggressive interpretation of mammography findings are not warranted. What would be useful would be to identify mammographic findings and subsequent pathology findings on biopsy that required aggressive intervention and those that could be safely followed. One type of breast cancer that is likely to be the subject of future studies is that called ductal carcinoma in situ, or DCIS, which may be more likely than some other types to resolve.

It may well be too soon to know the answer on mammographic screening, but it is clear that it is far from the perfect screening test that everyone would like it to be. We need more studies, and more information, and mostly we need a willingness to accept the accumulated findings of research. Certainly, what we do not need is for those who have a financial stake in screening and treatment to call good research “junk science” because it comes to conclusions that they do not like.

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[1] Bleyer A, Welch HG, “Effect of three decades of screening mammography on breast-cancer incidence”, NEJM 22Nov2012;367(21):1998-2005.

Gaming the system: Integration of healthcare services can just raise costs, not quality

My last blog post addressed the promises, and challenges, posed by the creation of integrated health care plans (or their new incarnation,Accountable Care Organizations, or ACOs, as defined by the Affordable Care Act, ACA), I summarized some of the good and the bad aspects of health care integration. The good often relate to the efficiency that can arise from a single organization which, in theory, can result in financial savings to both individuals and the health “system” as a whole. Unfortunately, this does not always happen, as demonstrated in the article “A hospital war reflects a bind for US doctors”, New York Times, December 1, 2012 (Nov 30 “online”; while in the “Business Pages” online, it is front page, even continued in the first section, in the print edition).

The article, by Julie Creswell and Reed Abelson, begins by focusing on the “picturesque” city of Boise, ID, where the two hospital systems in town have been buying up physician practices in order to more effectively “compete” with each other. St. Luke’s Health System, the larger, has been doing much more of the buying, so much so that the other, St. Alphonsus Regional Medical Center, is suing to prevent them “…from buying another physician practice group, arguing that the hospital’s dominance in the market was enabling it to drive up prices and to demand exclusive or preferential agreements with insurers.” Yes, driving up prices. They noted that the charge for colonoscopy has quadrupled and the charge for laboratory services is much higher. 

The CEO of St. Luke’s argues that not all prices have gone up, and, anyway, the ones that did were “underpriced” previously. This, of course, is hard to demonstrate in an industry where pricing is largely a fiction, where there are no “posted” prices and the charge to different payers varies enormously.  It is not like buying a car, where the dealer pays a certain amount to the manufacturer and you, as a customer, try to get them to charge you as close to what they paid as possible. Nor is it like buying a video game online as described in another Times article (“Retail frenzy: prices on the web change hourly”) in which you can find out if, for example, Target will respond to Amazon’s price cut by dropping its price even lower.

In health care, the “cost” to a provider (hospital or health system) includes both the “marginal cost” (what it actually costs to run that one more lab test or do that one more colonoscopy) and some percentage of their “fixed cost” for running the entire operation. Thus, ironically, by integrating and consolidating into a larger organization with a larger fixed cost, that overhead built into the price increases. The single lab test done by the health system lab has to pay part of the cost of that new MRI scanner and the technician that runs it and the super new invasive radiologist, while the price charged by the independent laboratory does not. Of course, the overall actual cost, in total, to all organizations may be going down, but the amount that the patient or their insurer pays for a low-cost test goes up!

This, as should be obvious, is not an issue limited to Boise. The Federal Trade Commission (FTC) has also gotten involved in investigations of pricing at St. Luke’s and other hospitals and health systems. The Times article quotes Jeffrey Perry, an assistant director in the FTC’s Bureau of Competition: “We’re seeing a lot more consolidation than we did 10 years ago….Historically, what we’ve seen with the consolidation in the health care industry is that prices go up, but quality does not improve.” Higher prices and the same (or lower) quality. Not exactly what we want to hear.

“Hospitals,” says Steve Messinger, president of ECG Management Consultants, an organization the Times indicated advises on physician acquisitions, “are constructing compensation in ways that are based on productivity and performance.”  Sadly, the “performance” piece only sometimes is tied to either quality of care for the patient or cost-effectiveness for the payer, but much more often to “productivity”, and particularly in how it increases revenues for the hospital. One of the ways that this can happen is by “churning” patient – increasing the number of admissions, for which hospitals get paid, but not keeping them too long because (since hospitals are paid by Medicare, at least, a fixed amount for a given diagnosis, based on a system called “DRGs”) shorter stays cost less and thus make the hospital more money. On the front end, the Office of the Inspector General of the Department of Health and Human Services is investigating whether hospitals are tying reimbursement of emergency physicians to how many patients they see per hour and the increasing the percent of ER patients who are admitted. Regarding “productivity”, one hospital noted that patients expect to be seen in a timely manner; of course, patients also expect to get appropriate and thorough care once seen, which can be inhibited by having to increase throughput. On the back end, there are several lawsuits from physicians charging that they receive bonuses if their patients are out of the hospital in less than 3 days. Now, no one wants to be in the hospital longer than necessary, and in fee-for-service payment structures there is financial incentive for doctors to keep their patients in longer as they can bill for each day, but no one wants to be rushed out of the hospital before they are well enough in order to meet a certain target length of admission.

Many of the worst “abuses” come from for-profit hospital or health care companies, such as some of those mentioned in the Times article. This is obvious; their incentive is to make money for shareholders, not to provide quality care except to the extent that it is necessary to make profits, and given the arcane nature of health care reimbursement, the association is not all that strong. Integrated health systems that have done a better job of decreasing costs and increasing quality, such as Kaiser, are usually not-for-profit. However, not-for-profit status is not a guarantee; especially when such hospitals have to compete with for-profits, they end up playing by the same rules. In addition, the Boards of Directors of non-profits are still looking at the bottom line, and are certainly not interested in losing money.

The key problem is the patchwork of rules and reimbursement systems that govern healthcare, and the opportunity for healthcare providers (hospitals, health systems, and even doctors – although they are, as the article points out, increasingly employees of those hospitals) to “game” the system, to find the holes, legal (or sometimes not) that permit them to make the most money. More admissions? Fewer readmissions? Shorter stays? More procedures? Higher prices for colonoscopies and lab tests? Whatever works for the bottom line, not for the highest quality of care of individual patients or communities.

This is nonsense. The goal should be to provide excellent health care, that which is needed by the patient and not more, at a reasonable price – and a price that can be identified. Our current payment system discourages that, and this is not right. The big, arguably necessary, step to a solution, is a single-payer (or highly regulated multi-payer) health system that provides hospitals with global budgets, not reimbursing per service item, while holding them responsible for providing quality health care to the patients in a particular community. Similarly, global (capitation) payments to physicians can permit them to rationally assign their time, staff, and resources to meeting patient needs in the most appropriate and effective manner. If a telephone call is all that is needed, why should someone take off a half-day of work to come in? Well, because that’s the only way doctors get paid, the current answer, goes away. If these global payments are combined into an integrated health system, perhaps we can have more results like Kaiser’s.

This would not solve all problems but it is the necessary if not sufficient starting point. And certainly, the profit driver is a major negative toward enhancing quality and limiting cost in healthcare.

Just thought I'd add this picture:

Health reform, ACA, and Primary Care: Is there still a conundrum?

Now that the election is over and the fact of the Affordable Care Act seems assured by the victory of the President and the increase in the Democratic majority in the Senate along with the Supreme Court’s upholding of most of the ACA’s provisions, the characteristics of change in the health care system (or, as I have often noted, non-system) can begin to be outlined. In my last post (November 17, 2012), I took note of the fact that even if the ACA is fully implemented there will be 30 million uninsured. If the states (mostly controlled by Republican governors and legislatures, including my own, Kansas) that have threatened to not participate in Medicaid expansion actually do not (and they can refuse; this is the part of ACA that the Supreme Court decision overturned), that number will be higher. But, clearly, there will be a large increase in the number of Americans with insurance coverage.

The big “systems” question is “How should health care delivery systems in the US re-engineer to deliver more efficient, more cost-effective care to more people for less money?” The key answer here is “more primary care”. Systems built around primary care have higher quality and lower cost than those which are built around specialty and sub-specialty practice. This has been recognized by the large health systems that do exist in the US (prototypically, Kaiser, but also others such as Geisinger in Pennsylvania, Cleveland Clinic, Inter-Mountain Health, and the model used in Grand Junction, CO) which are built around a large primary care base. They also have expanded services to support the practitioners (family physicians, most commonly, but also general internists, general pediatricians, and primary care nurse practitioners and physician’s assistants), which include many duties that do not have to be done by the physician (or NP or PA) being discharge by nurses, pharmacists, social workers and even community health workers.

Such organizations can do this because their systems are large enough, and because its expenditures in one area (say, higher salaries for primary care, or employing community health workers or more nurses, or more pharmacists) realize greater savings in other parts of its balance sheet. It works particularly well for Kaiser, because they are also the insurance company. This is what can happen with central planning and resource allocation, and provides some of the economic justification for a single-payer health system. In the current setup, especially in parts of the country less penetrated by large health systems, it can remain “everyone for themselves”. If the same organization does not control the primary care, specialty care, and hospital care, investments in one area will not necessarily result in savings in another.

The hope of ACA is that it will encourage even the most recalcitrant, specialist-dominated, fee-for-service communities to form such integrated models, called “Accountable Care Organizations”, or ACOs.    If these are to work, it will have to mean more primary care and fewer expensive (and profitable to the providers) procedures. The “primary care conundrum” is really two: there are not enough primary care providers (physicians, NPs, PAs) to meet the current demand, not to mention that which will arise in part from expansion of coverage but even more from expansion and aging of the population (see Petterson et al. “Projecting US Primary Care Physician Workforce Need [1]), and in most parts of the country the financial incentives are not in favor of students entering primary care, so this imbalance will increase.

Some communities, and even some academic health centers, are actively and aggressively moving toward the creation of ACOs; an excellent recent article in Health Affairs by Al Tallia and Jenna Howard [2] describes both the progress and the challenges of one AHC’s efforts to do so. The complexities and competing interests that exist in a situation such as that in New Jersey are a far cry from the integrated Kaiser model, but the obstacles appear as if they can be overcome, especially when, as under many of the provisions of ACA (most particularly not reimbursing hospitals for readmissions), the financial incentives are aligned.

The creation of additional primary care providers is going to be a longer haul. Payments for primary care are rising significantly in the same parts of the country where integrated health systems are dominant, as illustrated by quotes from a couple of family medicine chairs:

<    •       “…family physician salaries are going up quickly in Northeast Ohio. At Cleveland Clinic we have raised salaries of all family physicians by an average of 24% in the past 4 years.” (John Hickner)

\    •       n my neck of the woods (CA), there is huge unmet demand specifically for family physicians and enlightened organizations like Kaiser are paying handsome salaries (stunningly so) for FP grads fresh out of residency, and also offering loan repayment.”

But this is certainly not uniform across the country, and even in these areas, despite such big increases, the earnings of a family doctor are much smaller than those of many other specialists. (Hey, a 24% increase is good, but when previously your income was 1/3 of some subspecialists, it still leaves a large gap.) Research by the Robert Graham Center [3] suggests that income no longer plays a role in specialty choice when the lower-paid specialty earns 70% or more of the higher paid. More significantly, even if there is great movement into primary care, it will take decades to begin to approach the 50% ratio in the overall workforce.

So, we are left with good news and bad news. The good news is that more people will be covered; the bad news is that there will still be many left out. The good news is that in some parts of the country integrated health systems are demonstrating cost-effective ways of delivering health care and rewarding the primary care workforce; the bad news is that it is not by any means consistently happening across the country. The good news is that this seems to work best not only when every patient involved is insured, but when the expenditures and savings are realized by the same organization; the bad news is that there are lots of people outside of such a system and lots of places where medical practice is still “everyone for himself”. The good news is that there is increasing recognition of the importance of primary care practice; the bad news is primary care incomes still lag seriously behind that of many other specialists while medical school debt is rising. The good news is that team-based care is the most effective model; the bad news is that there is still inter-professional and inter-disciplinary competition rather than collaboration.

We can work to turn the bad news into good. But we must keep our eyes on all the problems, not just a few. The cost-effective, high-quality health systems that are developed will not be truly good news until everyone benefits from them.

 

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[1] Petterson S, et al., “Projecting US primary care physician workforce needs: 2010-2025”,Ann Fam Med 2012;10:503-509. doi:10.1370/afm.1431

[2] Tallia A, Howard J, “An Accountable Care Organization An Academic Health Center Sees Both Challenges And Enabling Forces As It Creates An Accountable Care Organization”, Health Affairs, 31, no.11 (2012):2388-2394

[3] Check out this very cool “Primary Care Mapper” from the Graham Center.

ACA after the election: Is it is the "fiscal cliff" or the social cliff that matters to people?

I recently attended a talk by Paul Starr at the San Francisco meeting of the Association of American Medical Colleges (AAMC). Dr. Starr, a professor of sociology and public affairs at Princeton who is probably most famous for his 1984 book “The Social Transformation of American Medicine”, has recently written a new book, Remedy and Reaction: The Peculiar American Struggle over Health Care Reform. His talk was on the same topic, and was pretty good. He spoke without notes or powerpoint (lauded by many as a display of great skill, but also meaning that his “slides” are not available to those who were not present). His main technique was to divide efforts to “do” health reform – essentially to cover everyone – into a “play” of 3 acts. The first act, with several “scenes”, was comprised of efforts during the Progressive Period around WW I, the New Deal, and after WW II, to develop a National Health Insurance program. He noted that, if the play had been written by a good playwright, the scenes wouldn’t have been so similar – but they were, scuttled, at least in part at all three times, by opposition from the American Medical Association. There were other issues: in the first, the anti-German sentiment during WW I was attached to the fact that Bismarck (in 1888) had developed the first national health insurance system in Germany; in the 1930s, the Roosevelt administration chose to focus on unemployment insurance and Social Security; in the late ‘40s, Truman’s efforts were again seen as “socialist” during the early Cold War.

The second “act” comprised the passage of Medicare and Medicaid in the 1960s, and the third act the efforts for comprehensive health reform begun under President Nixon, again attempted by President Clinton, and enacted in 2010 as the ACA under President Obama. Starr spoke the day before the November 6 election, and observed that if the Republicans won and, as planned, repealed ACA, 16 million additional people who would have been covered by expanded Medicaid would not be covered. Worse, he noted, if the Romney-Ryan plan to cut Medicaid expenditures by $1.7 Trillion over ten years was put into place, another 35 to 40 million people would lose coverage. Starr was a part of the core group who developed the Clinton Plan in the early 1990s, so it is, I guess, not surprising that he continued to exhibit a preference for that plan compared to ACA. He even argued that it was really pretty simple, not something anyone who can remember those days recalls. At the time, I remember a cartoon with two panels. The first, labeled “The Democratic Plan”, showed someone at a black board covered with complex formulas and “circles and arrows”. The second, “The Republican Plan”, showed a stern man (older white man, of course) in a suit saying “Don’t get sick.” Certainly, however, the expansion of health insurance coverage under ACA, with individual mandates, Medicaid expansion (limited by state choice given the Supreme Court decision), and support for private insurance companies, is pretty complex itself.

 

This, however, is not why I say the talk was only “pretty good”. The fatal flaw in Starr’s analysis is that he never mentioned the 30 million people who remain uninsured under ACA (or the probably comparable number that would have been under the Clinton plan). This is inexcusable; for a supporter of health “reform” not to even acknowledge this enormous population, even by saying “well, it was the best we could get through Republican opposition”, is hard to understand. Did he forget to mention it, or did he leave it out because it might somehow weaken some of his other arguments? I obviously don’t know, but it is not uncharacteristic of many political “insiders” who get so involved in their own issues that they forget things that are of great moment to tens of millions. Perhaps it is because the best, most effective, and most cost-effective answer is a single-payer health system, and that was something he and the other Clinton health planners rejected 20 years ago off the bat, so he didn’t want to bring it up even now.

But the Obama victory on November 6, as much of a relief as it was, as much of a deep breath that we can take to know that a majority of the people were not taken in by lies, racism, and meanness of the campaign, does not end the struggle, either for the ACA or those left out of it. Yes, the election shows that America is no longer completely controlled by white men (whose votes Romney overwhelmingly won; see Maureen Dowd, Romney Is President, New York Times, November 11, 2012), but nearly half the country voted for the Republicans. This included many who were not white men, as well as most of the white men who voted for Romney despite his support for policies that would be counter to their economic self-interest. And a huge swath of states, mainly through the South, Plains, and Mountain regions, were bright red and have governors and legislatures still staunchly opposed to “Obamacare” and in opposed to Medicaid expansion in their states. And the people returned a significant Republican majority to the House, who can be expected to do everything that they can to limit the full implementation of ACA.

The Republicans opposed ACA, and opposed the individual mandate that was the necessary condition required by the health insurance companies to agree to key components of ACA such as guaranteed issue of health insurance and no exclusion of people for having pre-existing conditions. Having lost both the Supreme Court decision and the election (which means that the Court is unlikely to have its more “liberal” justices replaced by conservatives) it remains to be seen whether they will move toward support for the mandate because it benefits one of their natural constituencies (read: “contributors”), the large health insurance companies, or continue to oppose it because of their principled (read: “mean spirited and selfish”) opposition to everyone having health insurance coverage.

I fear that it will be the latter. It will not appear (at least not often; there will be gaffes) as “we don’t think everyone deserves coverage” but will be dressed in the guise of “fiscal responsibility”.  “Deficit hawks” will tell us that we can’t afford it, that we will fall off the “fiscal cliff”. In his November 12, 2012 New York Times piece, Hawks and Hypocrites, Paul Krugman addresses this issue, and calls those who argue this position “deficit scolds” because their warnings and suggested policies (mostly cut taxes especially on the rich) don’t make sense. Rather, it is clear, their agenda is to decimate and eliminate Medicaid, and Medicare if they could (or at least privatize it, which will make it unable to cover seniors’ health expenses), and preferably Social Security (if they could get away with it) and any other programs that support the most, rather than the least, needy.

This is wrong (I was going to say “obviously”, but it is clearly not obvious to many). It is not only wrong on the moral count, as was succinctly presented by FDR, who said “"The test of our progress is not whether we add more to the abundance of those who have much; it is whether we provide enough to those who have too little"; it is wrong economically. For our nation and economy to grow, everyone needs to contribute, and to be able to do that they need to be healthy and have good access to health care. I have written about the “social determinants of health” (“Social determinants, personal responsibility and health system outcomes”, September 12, 2010), but it is really a vicious cycle, in which health and other social factors affect each other. Those social determinants, including especially poverty, that lead to poor health also lead to difficulty in getting a good education and getting a good job, thus repeating the cycle for future generations. (A good example is that of “cold winter housing”, discussed by the British Medical Association in "SocialDeterminants of Health: What Doctors Can Do” (link to pdf is on the right side of that page), and by me in “Michael Marmot, the British Medical Association, and the Social Determinants of Health”, November 1, 2011).

The right thing to do is also the economically prudent thing to do. There is a “cliff” that we should be worrying about. It is not the “fiscal cliff”, but the cliff face that so many people live too close to and are in danger of falling off.*

  *(See Camara Phyllis Jones’ “cliff analogy”, “Social Determinants of Health and Equity, the Impacts of Racism on Health”.)

"The Public Health and Social Justice Reader"

I'd like to call attention to the publication of the PUBLIC HEALTH AND SOCIAL JUSTICE READER, edited by Martin Donohoe, MD, and just published by Jossey-Bass.

Those who are not familiar with Dr. Donohoe's remarkable website, Public Health and Social Justice (www.publichealthsocialjustice.org or www.phsj.org) will be amazed at the depth and breadth of the contents, addressing most important aspects of the subject, from Human rights to war, from issues addressing special populations and women to environmental health and justice, from the impact of the "modern epidemics" of obesity, tobacco and suicide by firearms to the modern epidemic of corporate control of our lives and health.

Those who are familiar with www.phsj.org and the breadth of powerpoints on that site will not be surprised to find that Dr. Donohoe himself has written a large number of chapters himself, although there is a very impressive list of other chapter authors.

The PUBLIC HEALTH AND SOCIAL JUSTICE READER is an indispensable resource for students and teachers of health and medicine as well as for policy makers and activists, and is a wonderful accompaniment to the resources available on www.phsj.org.

The table of contents is below; more information is available at www.phsj.org

Public Health and Social Justice Reader

TABLE OF CONTENTS::

PART I Human Rights, Social Justice, Economics, Poverty, and Health Care; 1. Universal Declaration of Human Rights; 2. Public Health as Social Justice, Dan E. Beauchamp; 3. What We Mean by Social Determinants of Health, Vicente Navarro; 4. The Magic Mountain: Trickle-Down Economics in a Philippine Garbage Dump, Matthew Power; 5. Family Medicine Should Encourage the Development of Luxury Practices: Negative Position,Martin Donohoe

PART TWO Special Populations; 6. Homelessness in the United States: History, Epidemiology, Health Issues, Women, and Public Policy, Martin Donohoe; 7. Historical and Contemporary Factors Contributing to the Plight of Migrant Farmworkers in the United States, Safina Koreishi, Martin Donohoe; 8. The Persistence of American Indian Health Disparities, David S. Jones; 9. Prejudice and the Medical Profession: A Five-Year Update,Peter A. Clark; 10. Sexual and Gender Minority Health: What We Know and What Needs to Be Done, Kenneth H. Mayer, Judith B. Bradford, Harvey J. Makadon, Ron Stall, Hilary Goldhammer, Stewart Landers; 11. Mental Disorders, Health Inequalities, and Ethics: A Global Perspective, Emmanuel M. Ngui, Lincoln Khasakhala, David Nndetei, Laura Weiss Roberts; 12. Incarceration Nation: Health and Welfare in the Prison System in the United States, Martin Donohoe

PART THREE Women’s Health; 13. Individual and Societal Forms of Violence Against Women in the United States and the Developing World: An Overview, Martin Donohoe; 14. Obstacles to Abortion in the United States, Martin Donohoe; 15. The Way It Was, Eleanor Cooney

PART FOUR Obesity, Tobacco, and Suicide by Firearms: The Modern Epidemics; 16. Weighty Matters: Public Health Aspects of the Obesity Epidemic, Martin Donohoe; 17. Cigarettes: The Other Weapons of Mass Destruction, Martin Donohoe; 18. Guns and Suicide in the United States, Matthew Miller, David Hemenway;

PART FIVE Food: Safety, Security, and Disease; 19. Factory Farms as Primary Polluter, Martin Donohoe; 20. Genetically Modified Foods: Health and Environmental Risks and the Corporate Agribusiness Agenda, Martin Donohoe; 21. Opposition to the Use of Hormone Growth Promoters in Beef and Dairy Cattle Production (American Public Health Association Policy Statement, Adopted 2009), Elanor Starmer, David Wallinga, Rick North, Martin Donohoe;

PART SIX Environmental Health; 22. Roles and Responsibilities of Health Care Professionals in Combating Environmental Degradation and Social Injustice: Education and Activism, Martin Donohoe; 23. Global Warming: A Public Health Crisis Demanding Immediate Action, Martin Donohoe; 24. Flowers, Diamonds, and Gold: The Destructive Public Health, Human Rights, and Environmental Consequences of Symbols of Love, Martin Donohoe; 25. Is a Modest Health Care System Possible? Andrew Jameton

PART SEVEN War and Violence; 26. The Health Consequences of the Diversion of Resources to War and Preparation for War, Victor W. Sidel, Barry S. Levy; 27. A Brief Summary of the Medical Impacts of Hiroshima, Robert Vergun, Martin Donohoe, Catherine Thomasson, Pamela Vergun; 28. Medical Science Under Dictatorship, Leo Alexander; 29. War, Rape, and Genocide: Never Again? Martin Donohoe

PART EIGHT Corporations and Public Health; 30. Combating Corporate Control: Protecting Education, Media, Legislation, and Health Care, Martin Donohoe; 31. The Pharmaceutical Industry: Friend or Foe? Jennifer R. Niebyl; 32. Unnecessary Testing in Obstetrics, Gynecology, and General Medicine: Causes and Consequences of the Unwarranted Use of Costly and Unscientific (yet Profitable) Screening Modalities, Martin Donohoe; 33. Urine Trouble: Practical, Legal, and Ethical Issues Surrounding Mandated Drug Testing of Physicians, Martin Donohoe

PART NINE Achieving Social Justice in Health Care Through Education and Activism; 34. Promoting Public Understanding of Population Health, Stephen Bezruchka; 35. Some Ideas for a Common Agenda, Peter Montague, Carolyn Raffensperger; 36. Taking On Corporate Power—and Winning, Robert Weissman; 37. US Health Care: Single-Payer or Market Reform, David U. Himmelstein, Steffie Woolhandler; 38. US Health Professionals Oppose War, Walter J. Lear; 39. The Residency Program in Social Medicine of Montefiore Medical Center: 37 Years of Mission-Driven, Interdisciplinary Training in Primary Care, Population Health, and Social Medicine, A. H. Strelnick, Debbie Swiderski, Alice Fornari, Victoria Gorski, Eliana Korin, Philip Ozuah, Janet M. Townsend, Peter A. Selwyn; 40. Stories and Society: Using Literature to Teach Medical Students About Public Health and Social Justice, Martin Donohoe

Health is not a commodity: Let us get the language right

Sometimes the starkest realities are hidden by the language that we choose to speak about them. This week I attended two important conferences, the annual American Public Health Association (APHA) meeting of about 8000 or more public health workers from across the country, and, on the day preceding it, the annual Physicians for a National Health Program (PNHP) meeting, with about 400 doctors and medical students.

While the PNHP program was more targeted, examining the impact of lack of access to health care in the US on the health of our people, it also included international participants. One, Dr. Alex Benos of Greece, talked articulately about the impact of European Union and IMF imposed “austerity” measures on the health of the Greek people -- so bad that the child poverty rate there has risen to 16%. The impact of the penalties for “bad” (albeit sanctioned and even encouraged by governments) behavior by bankers is being borne by the people, and especially the poorest, in Greece, in Spain, in Portugal – and in the US, where the child poverty rate, 23% still significantly exceeds that of Greece. While they have been dramatically underplayed by the US media, there have been massive, massive, and regular demonstrations against these attacks on the people, and in Greece (as elsewhere) physicians such as Dr Benos are there on the lines with their patients, providing medical care and demanding the core basic social services that their patients need.

“Health and health care,” Dr. Benos says, “are not commodities that exist to drive the economy. They are among the social goals which we have an economy to achieve.”

Think about that. We have been so inundated with news articles, pundits, politicians, and others talking about The Market, about the need for austerity, that we have forgotten to ask the key question of “why is there an economy? What is the goal of production?” It is the national and international version of the phrase we hear so often in businesses, including hospitals: “No margin, no mission.” Perhaps, but much more important is to have a mission; otherwise it is “No mission, no mission”. When a hospital makes money on its profitable “product lines”, what is the mission? To help provide for the basic healthcare needs of the poor and uninsured? Or to invest in expanding those already-profitable product lines? If our national and international economies generate wealth, is the goal to provide the basic health needs of those whose labor created that wealth? It is clear what we have, de facto, chosen in the US: since 1992 the top 400 taxpayers have had a 500% increase in income, and the rest of the top 5% a 150% increase. 50% of the total increase in income over that period has gone to the top 400 people, and 93% to the top 5%!

”Solidarity,” Dr. Benos adds, “means no one should be left alone in this crisis.”

His work and that of other Greek physicians is to be sure that this definition of solidarity is the one they live by. For us, in the US, a stronger sense of social solidarity would be important; indeed, any sense of social solidarity would be an improvement. The evil myth propagated by many in the US is that when we support the core needs of the most vulnerable, we weaken the economy; in fact, the reverse is true. Providing a core set of social service, including health care, education, housing, food, and opportunity, increases our ability to be a strong society. It is the opposite, the concentration of all wealth in a few, that jeopardizes our future. Trickle down, it should be clear now, doesn’t happen.

“The ideology,” said Andrew Coates, another speaker and PNHP president-elect, “is that whatever is private is good and whatever is public is bad. It is not true, and it is certainly not cheaper.” Let us compare the US to our closest neighbor, Canada, where most health care services are privately delivered, but are paid for by a single payer, the government. The US spends $8230 per capita on health care, of which $5290 are public $ (counting not only direct expenditures for Medicare, Medicaid, VA, military, and federal , state and local employees and retirees, but also the foregone tax revenue resulting from employer contributions to health insurance being tax exempt). In Canada, total expenditures are $4440 per capita. Thus our public fund expenditures per capita exceed Canada’s total expenditure. Hospital billing administrative costs in the US are $570 per capita and total administrative costs are $2685; in Canada, the numbers are $182 and $809 respectively. The gap in life expectancy between the highest and lowest quintiles of income was 1.5 years in 1972. In 2011 it was nearly 6 years. Life expectancy is lower in the US, as are life years adjusted for disability, infant mortality, and virtually every other health indicator. Our money is not buying value; it is accruing wealth to a few.

That language is important was emphasized by presenters at several of the APHA sessions I attended (there are literally hundreds of them over the course of the conference). Sonja Bettez, from the University of New Mexico, observed that talking about health “disparities” tends to minimize the structural violence done to the populations of people who suffer those disparities, and that in Latin America this term is never used; rather the discussion is of inequities, or inequalities. Broad-based differences in health status between populations based on class, race, and other characteristics are not just disparities, they result from deeply seated societal and social problems. Using the language of disparities serves a political purpose, she notes, as it tends to pre-empt social change by emphasizing individual behavior change. She also notes the absence of the term “social justice” from any of the decennial iterations of Healthy People, not to mention the absence of “racism”. How we label things has a great deal to do with how we think about what is necessary to correct them.

In another vein, Donald Light spoke about pharmaceutical companies and marketing, noting the language of “the risk-benefit” ratio (which I have used in this blog) does not make sense because it doesn't identify risk of what? Accurately, it is a risk-risk ratio, the risk of harm vs the risk of benefit, or “harm-benefit” ratio. This is more stark, and more correct. Dr. Light also discussed what he calls the “inverse benefit law”: that the more widely marketed and used a drug is, the less benefit and more harm results. This makes sense; the lowest harm-benefit ratio accrues from the limited use of a drug for those specific conditions, and in those specific people, in whom it has been shown to have the most benefit; as the use of the drug expands to conditions for which it has been less clearly shown to be beneficial, the risk of harm does not decrease and the harm-benefit ratio increases.

It was a very instructive week, and one in which a lot of information was shared. Sadly, it was not all good, and the future, from the economic crisis in Greece to the health care system in the US, is pretty cloudy. But using language carefully and accurately to correctly label problems helps us to identify potential solutions. I think a good touchstone is for us to reject the idea that our health, and that of our families and friends and the entire society, should be a vehicle for profit. Dr. Benos has it right when he says the health is a social good for which we must strive, not a commodity.

Now our task is to make that a reality in the US.

Medicare, falls, families, and risk: "Qualifying" to be in a safe place

Older people are, like all people, a widely varied group. Some are healthy and independent and can live on their own until very old age, while others have diseases that make them infirm at chronologically much younger ages. Some live with family members or have family members living with them. Most of those are well cared for, but some are exploited or even abused. Some elders live in assisted living facilities or nursing homes. A lot more of them are women than men, a reflection of differences in life expectancy. And most of them will, sooner or later, have an adverse event occur that leads them to be hospitalized. Sometimes it is almost routine, getting admitted for a complication of an existing condition such as chronic lung disease or heart disease; sometimes it a surprise, as when a 90-year old who has lived alone and been healthy falls and breaks her hip. The first time something happens, I find myself often repeating to these people and their families, is always the first time, whether at 20 or 90.

Whenever I am the attending physician on our inpatient service, we have a number of such people admitted, but in the last two weeks the number of people admitted who were what my residents call “little old ladies” seemed especially high. They ranged in age from their late 60s to 104; some lived in nursing homes, some with family, and some lived alone (including the 104 year old!). Some were admitted to the hospital for the first time, while others were “frequent fliers”; some had families hover around and others seemed to be left alone even when their family lived in town. A lot of them had falls, sometimes with broken bones (most commonly hip fractures, but others as well), sometimes, fortunately without. Some had moderate to very severe dementia, from Alzheimer’s or other causes, and may know only who they are (or not even that); others are “sharp as a tack” – at least when we can fix the dehydration or whatever else has brought them in.

One characteristic shared by many of these people is that they are unlikely to be safe returning to their homes. If they have fallen, they are likely to fall again. If they avoided a hip fracture this time, they may not next time. We do tests to see if there is an “explanation” for why they fell that might be treatable. Did they have a stroke? Should they be on blood thinners that make another stroke less likely but make the possibility of a bleed into their brain much higher if they do fall and hit their head? Heart rhythm problems? Maybe a pacemaker. Low blood sugar? Are they taking too much insulin? Maybe they “just” tripped: on the cat, on the rug, on the hem of their pants (which might be because those pants are hanging low from the 40 lbs they have lost since they were last seen a year ago -- really? I have been eating. I never noticed I was losing weight!) But, while anyone can trip, if it happens more than a couple of times, they are at risk of something bad. Sometimes it is possible for a health worker or family member to the home and help get rid of clutter, area rugs, and such, but sometimes that isn’t enough.

No one wants to go to a nursing home, especially compared to some idealized vision of being better and functional at home. Few families want to send their parents or grandparents to a nursing home, feeling that it is abandonment, or undignified, or irresponsible. Occasionally, there are complicating social issues, as nursing homes will take the Social Security check that family members are living on or Medicaid will require the sale of the house that family members are living in. And nursing homes are not a panacea; some are better than others, and folks get sick enough to require admission back to the hospital even from the best. But often they are a safer option, even when the family is committed to care. A person may be hospitalized by the family for a minor change that makes the Alzheimer’s victim even harder to care for; the primary care doctors may have already discussed admission to a nursing home, and, as one put it, “their voices said ‘no’, but their eyes and body language said ‘yes’.”

Medicare will pay for a period of time in a “skilled nursing facility” (SNF), where a person who was hospitalized but no longer needs to be in an acute-care hospital can get time to recover, get physical therapy, get to the point where they in fact, often with home health and a supportive family, go home. It works for someone who just had surgery, or someone who broke a bone and either had it surgically repaired or not. But to get this “benefit” the person needs to spend 3 midnights in the acute care hospital. Whether they need acute care or not. Indeed, if they don’t “meet Medicare criteria” for an inpatient hospitalization, they are not even officially “admitted” but are in a fantasy world of “observation status” where they are in the hospital, but are officially outpatients. And those nights don’t count toward “qualifying” for a SNF. So if you (or your father, or grandmother), “just” tripped and hurt themselves, and didn’t break a hip this time (sometimes they have already had both hips repaired), and is “just” bruised, and may have a “little” disorientation but no new stroke, and a little difficulty caring for themselves, and could really benefit from a month of skilled nursing, you better be able to pay for it, because Medicare won’t because they didn’t have 3 nights of “qualifying”.

This is crazy. I am a huge fan of “Medicare for All” rather than the nonsense patchwork of often-inadequate private insurance plans (and people who are uninsured) that we currently have. But that Medicare for all – and right now, for those who are on it – needs to have a rational payment and benefit structure. I understand the financial challenges facing Medicare (and the whole health insurance system – it is not a “Medicare” problem, it is a medical care problem) and believe that we need to save money by spending it rationally. This means, perhaps, not paying for every drug that the FDA approves even when it is not better than an existing, cheaper drug. This means not doing fantastically expensive interventions on people whose quality and duration of life will be marginally affected. It does mean placing people in the settings in which they can get the most appropriate, cost-effective care, whether at home with or without home health, in a skilled nursing facility, in a long-term care facility or in an acute care hospital. It does not mean requiring that someone who would benefit from a stay in an SNF first have to “qualify” by being in an acute care hospital overnight.

My local paper recently had a big front-page article about the fantastic new technology being employed at our hospital using GPS to map the location on the heart where an abnormal rhythm is being generated, so that it might be able to be fixed. Congratulations to the cardiologists and engineers who have developed this, and to the PR department that got it in the paper. It might be a big help for a few people, and will almost certainly be very costly (and profitable for the hospital). But as we develop all these expensive new technologies that might help a few people a lot and might help a few more a little, it is insane if we save money by not providing what we already know is the right thing in prevention and intervention for the conditions that affect the many. Right now, Medicare is trying to save money by identifying “fraud”; they do this (this is absolutely true!) by contracting with bounty-hunter companies called “RAC”s to discover when a patient has been “admitted” when their condition didn’t technically qualify and they should have been on “observation” status. They should be saving money by not paying for expensive high-tech procedures which offer little benefit.

A rational health care system, as we have discussed before, means that people are getting the right care in the right setting; this is the ostensible promise of health-care integrated systems. But, just as we will never have enough primary care doctors doing prevention and early treatment as long as we pay them a fraction of what we pay those doing heroic (and often ineffective) intervention for far-advanced disease, we will not have a rational health care system if we pay for huge high-ticket items but not for people to be in the right setting for them to receive the care that they need.

Medicare can, and should take the lead. For seniors, it is our national health program. Others will follow. 

Simple treatments: bad doctors or a bad health system?

The New York Times editorial on September 9, 2012, “Simple treatments ignored”, is a commentary on a report in the September 7 issue of the Centers for Disease Control and Prevention (CDC) publication Morbidity and Mortality Weekly Report (MMWR)  that many Americans with hypertension (high blood pressure) were not being adequately treated. The Times notes that the study “found that 67 million Americans had high blood pressure and that 31 million of them were being treated with medicines that reduced their blood pressure to a safe level. The remaining 36 million fell into three groups: people who were not aware of their hypertension, people who were aware but were not taking medication, and those who were aware and were treated with medication but still had hypertension.”

This is definitely not a good thing; hypertension is a serious disease that can have devastating results – most obviously in stroke, but also in increasing the risk of heart attack and kidney failure. Also, as the article states, treatment is relatively easy – that is to say, there are drugs that are available for effectively keeping hypertension under control. In fact, so many people are receiving effective treatment that the incidence of bad outcomes, such as stroke, has greatly decreased. The Times editorial, however, creates the impression that much or most of the fault of for lack of treatment is the result of ignorant, incompetent, uncareful (or uncaring) physicians; the reason, they write, is “…mostly because overburdened doctors did not give hypertension high priority.” This is a highly dubious assumption.

The editorial goes on to praise, specifically, the Kaiser Health System for doing a good job of controlling its patients’ blood pressure, and thus reducing the rate of strokes and heart attacks:  “The organization created a hypertension registry to track patients and the care they were getting; eased the burden on doctors by using pharmacists to initiate drug therapy and medical assistants to monitor patients’ progress; made it easy for patients to get free blood pressure checks; and showed doctors how their record on controlling blood pressure compared with others in the system.” This is great.

People should get treated effectively for treatable diseases, and hypertension is certainly one. There are, however, many reasons why they are not always treated, and this problem includes patient as well as provider issues. Hypertension is, on the whole, asymptomatic; it does not cause pain or weakness or even, usually, headaches; thus the sobriquet “silent killer”. The treatments, in addition to drugs, include things like “…weight loss, increased physical activity, lower sodium and alcohol consumption, and stress management,” which require significant effort and commitment on the part of the patient, and are not easy to do.

But, more important, the lessons of Kaiser are not easily translated into the rest of the health system. Kaiser is a very atypical in that it is a vertically-integrated, closed-panel health system. For starters, and it is a very important start, every patient in their panel is insured (though Kaiser) and every patient sees a Kaiser provider. Thus, they control both the coverage and direct care of this population, and they have a large enough scale to do outreach programs to encourage and support people in adopting and maintaining the behaviors listed above. This is, however, not the case for most of the community. Many people are not insured, and many others have insurance that does not cover drugs and other treatments. A variety of factors, some provider related (such as not being able to get an appointment) and others originating from patients’ own decisions (choosing to go to ERs and urgent care centers, and indeed “doctor shopping”), they see different providers. That the US has an uncoordinated health non-system is the key problem, not that "their doctors are asleep at the switch."

The article concludes: “The benefits of reducing high blood pressure — not to mention the cost savings — are obvious. The wonder is that the health care system has done such a bad job of delivering those benefits.” To me the wonder is that we have tolerated not actually having a health system for as long as we have, and that health policy continues to try to address issues of quality of care while ignoring the elephants in the room: that so many people have no coverage or poor coverage, and that reimbursement overwhelmingly rewards intervening once problems have arisen rather than preventing them. That a physician hired by a hospital to inject clot-busters into the brain’s arteries to try to reverse a stroke that has already occurred earns, literally, several times as much as (and works much less than) a primary care physician who treats hypertension (and many other diseases). The reimbursement system is completely inequitable and inappropriate, and the health system is a sick hodge-podge of half measures.

First, we need a health insurance system that covers everyone: Medicare for all. Then we need to reward systems-based and outcomes-based care. Then maybe all of us can see results like Kaiser's.

Physician advocacy: for patients and for social change

A recurring question for physicians and others in the health profession is what degree of health advocacy is expected or appropriate. For those of us in medical education, the question becomes how much of the training (and evaluation) of medical students and residents should be based on advocacy for their patients or populations. Sarah Dobson and colleagues provide a useful formulation of this question in a “Perspective” in the recent Academic Medicine, “Agency and activism: rethinking health advocacy in the medical profession”.[1] They note that “Health advocacy appears in various forms in professional charters and standards”; however, as Canadians they focus on the CanMEDS document. This is “…a competency-based framework developed by the Royal College of Physicians and Surgeons of Canada that describes the core knowledge, skills, and abilities of specialist physicians,” that has 7 core roles including “health advocate”.

In the United States, the clearest expression of the role of advocate is in the American Medical Association’s (AMA) Declaration of Professional Responsibility: Medicine’s Contract with Humanity, which contains, as item #8, “Advocate for social, economic, educational, and political changes that ameliorate suffering and contribute to human well-being.” Overall, the Declaration is quite an impressive document, the contents of which would surprise many in both the medical and lay communities who think of the AMA as professional advocacy group with no social conscience; sadly, there might be as many unpleasantly as pleasantly surprised by the discovery. Advocacy for patients is generally considered an appropriate role for physicians by physicians, but advocacy for social, economic, educational and political change is far less widely accepted.

Dobson and colleagues propose a parsing of the concept of advocacy into two components. They call these “agency”, working on behalf of the interests of a specific patient, and “activism”, which is more directed toward changing social conditions that impact health, and whose effect is seen on populations more than individuals. This is helpful in clarifying different perspectives on the term “advocacy”. While the CanMEDS framework, for example, calls for physicians to “…responsibly use their expertise and influence to advance the health and well-being of individual  patients, communities, and populations,” the authors observe that trainees “…have variously described it as charity or as going above and beyond regular duties.” They note that “...several studies have concluded that although physicians generally endorse the idea of advocacy, they rarely engage in it.” They summarize the difference between agency and activism by saying “…whereas agency is about working the system, engaging in activism is about changing the system.”

The article concludes that there is a distinction to be made between the role and responsibilities of the individual physician and that of the medical profession as a whole. “Physicians and other health professionals witness the effects of the socioeconomic determinants of health every day, made

visible to various degrees in every patient encounter, “ but they question “whether this authority translates into an obligation.”

There are, however, many physicians who do act as social activists, and we need more of them. The source will be medical students who then become residents. Luckily, there seem to be no shortage of entering medical students with this commitment. They demonstrate it by community volunteer work, creating and working in free clinics, volunteering their time to work in schools, and pursuing training in public health, public policy, and community involvement. Sadly, however, along with empathy, which has been shown to dramatically drop as medical students enter their clinical training (Hojat, et al.[2], and this blog, “Are we training physicians to be empathic? Apparently not.”, September 12, 2009), so does volunteerism and commitment to social change.

In the US, despite the AMA Declaration, there are no requirements for teaching advocacy included for teaching medical students by the Liaison Committee for Medical Education (LCME), which accredits medical schools, or in training residents by the Accreditation Council for Graduate Medical Education (ACGME), which accredits residency programs. In the absence of such requirements, it is less likely that advocacy programs will be developed for students and residents, and more likely that, when they are, it will be the students who are already interested in doing such activities who participate. That is great, and programs which allow students to be involved and helps “inoculate” them against from losing their interest and commitment will continue to exist (such as several that we have here at the University of Kansas School of Medicine, including our free clinic and longitudinal elective Community Leadership track). However, if these are not expectations of all students, of all physicians, then only a minority will be involved.

Indeed, when we look at the American political landscape, we see a fair number of physicians involved in politics. It could be argued that, in these roles, they are advocating for social, economic, educational, and political changes. What is disconcerting is that the majority of these physician politicians seem to ignore the second half of that sentence, “…that ameliorate suffering and contribute to human well-being”. They are often found among, and sometimes as leaders, in advocating policies that slash the social safety net, decrease funding for public education, and oppose universal health insurance. Too frequently, they act as agents of their own social class than as advocates for those most in need.

That doctors will most often adopt the “agency” role when it comes to issues that most directly affect the health of their patients, that can be arguably seen as “medical”, is very reassuring. I was once at a physician meeting in which a “conservative” state legislator was speaking against a statewide smoking ban. Reassuringly, the vibe in the room was very hostile to the content of her remarks. Sensing that, she turned to a physician from her district who was also very conservative and a political supporter of hers and said “You? Do you agree with this?” To which he shrugged his shoulders and replied, “I’m a doctor!”

The advocacy role is more complex. Not only are many physicians socially conservative and not, perhaps, in support of policies “…that ameliorate suffering and contribute to human well-being,” physicians are busy people who mostly see themselves in the role of providing direct patient care, not advocating for systemic societal change. Even physicians with public health roles may see their advocacy in a much more limited way (for immunizations, smoking cessation, cancer screening, seat belt use, etc.) rather than structural societal change.

I would like to think that all physicians manifest advocacy in the “agency” sense for their patients. It may be wishful thinking to hope that all physicians will manifest advocacy in the “activist” sense, that they will fulfill the AMA’s Declaration by actually advocating “…for social, economic, educational, and political changes that ameliorate suffering and contribute to human well-being.” But if we do not make this a core value for physicians that is ubiquitously taught in medical school and residency, if we do not select students because of their commitment to advocacy, we will have much less of it.

And we need it badly.

---

[1 Dobson S, Voyer S, Regehr G, “Agency and activism: rethinking health advocacy in the medical profession”. Acad Med. 2012;87:1161–1164.First published online July 25, 2012. doi:10.1097/ACM.0b013e3182621c25

[2] Hojat M, Vergare MJ, Maxwell K, et al, “The Devil is in the Third Year: A Longitudinal Study of Erosion of Empathy in Medical School”, Academic Medicine, Sept 2009;84(2):1182-91

Abortion and women's health: who truly has a conscience?

“Conscience clauses” have become increasingly common in laws about health care as state legislatures seek to limit people’s access to services that they don’t approve of but have not, as yet, been able to make illegal. Of course, it started with abortion care, with doctors being allowed to “opt out” of training requirements for abortion (not that anyone was ever required to “opt in”), and gained momentum with the development of mifepristone (formerly RU-486), the abortion pill, ensuring that pharmacists would not have to fill prescriptions for it if they opposed abortion.

Of course, mifepristone is only sold directly to providers, so pharmacists are not called upon to fill these prescriptions, so the laws moved on to whether pharmacists could refuse to fill prescriptions for emergency contraceptives (the “morning after pill”). A lot of jurisdictions passed laws under the guise of the “conscience clause”, some even permitting pharmacists to not even dispense regular contraceptive pills. Which, of course, can be used for emergency contraception. And which, of course, is not abortion. But so much for the facts.

It is not coincidental that these restrictions have focused on women’s reproductive health. It appears that legislators’ concern is not about “right to life” (which many make a joke of with their opposition to anything that might help people after they are born), and fall into the arena of “women’s reproduction and the things associated with it, like sex, make us uncomfortable and so we don’t want to be involved with it”. In addition, there is persistent undertone of “…after all, these are women, people who do not understand how to take care of themselves and make their own decisions, so we have to do it for them.” This is pretty clearly part of the agenda of the religious right – limiting the ability of women to make their own decisions about their bodies.

Indeed, a victory for women was achieved when emergency contraception was made available without a prescription – and then a step backward was taken when HHS Secretary Kathleen Sebelius overruled recommendations from the FDA and prevented its availability without a prescription to women under 17. Now that makes no sense at all if one is concerned about their health – women under 17 are the most likely to have sex without contraception, to be pressured into sex by men, to not be able to plan whether they are going to have sex and thus possibly become pregnant, to have the self-efficacy to walk into a pharmacy and ask for emergency contraception. So we are going to make it particularly difficult for them? Well, it does make sense for an agenda that says “limit rights where we can limit them” and we can move on from there. Yes, these girls are the most vulnerable. So let us victimize them.

What is particularly upsetting is the usurpation of the language of conscience by those who would restrict women’s reproductive options. We do not hear of conscience clauses about not dispensing Viagra, Cialis, and the like because the loss of ability to have an erection with age is natural. Or for that matter, against cosmetics, or drugs that will treat God-given genetic chronic diseases. A joke, but not so funny, supposes a Christian Scientist pharmacist who refuses to supply any medication. This usurpation of language is parallel to the current ownership of the language of “life” by the anti-abortion movement. The implication is that pro-choice people do not value life, but our argument is that we value the life of the born – the woman, children who are alive, and those who might be born.

Into this discussion comes the voice of Lisa H. Harris, in a New England Journal of Medicine “Perspective”, September 13, 2012, “Recognizing conscience in abortion provision”.[1] Dr. Harris argues that the provision of abortion is also driven by conscience, and that this right to conscience has not been protected. So firmly has “conscience” been associated in public discourse with the right to refuse to do abortion, the idea that conscience can be, and is, central to the decision of the abortion provider is almost jarring. And yet it is certainly true.

Harris refers to the work of the physicians who practiced abortion at great risk to themselves, their reputations and their ability to continue to practice medicine in the years before Roe v. Wade:

The conclusion that abortion provision is indeed “conscientious” by this standard is best supported by sociologist Carole Joffe [2], who showed in Doctors of Conscience that skilled “mainstream” doctors offered safe, compassionate abortion care before Roe. They did so with little to gain and much to lose, facing fines, imprisonment, and loss of medical license. They did so because the beliefs that mattered most to them compelled them to. They saw women die from self-induced abortions and abortions performed by unskilled providers. They understood safe abortion to be lifesaving. They believed their abortion provision honored ‘the dignity of humanity’ and was the right — even righteous — thing to do. They performed abortions ‘for reasons of conscience.’”

There are no doctors who showed more courage, more conscience, than these pre-Roe abortion providers. But the power of this commitment, of this conscience-driven provision of abortion, has not lessened in the post-Roe years. The ever-more restrictive laws passed by state legislatures, seasoned with the constant picketing and harassment of patients, leavened with bombings and fires, and finally consummated by the murder of abortion providers, should leave no doubt about the moral strength of these people. The testimonies on “Why I Provide Abortions”, on the website of Physicians for Reproductive Choice and Health (PRCH), or those its video “Voices of Choice” (including the voice of George Tiller, MD, murdered in 2009; see my post In Memoriam George Tiller, May 31, 2009) are clear and moving; they come from physicians who know that, if they do not provide safe abortions, women will obtain them unsafely at the risk of their lives:

"My experience goes back to my residency training at Boston City Hospital. I was appalled by the intermittent but steady stream of otherwise healthy young women dying in front of my eyes from septic shock due to unsterile, botched procedures.”

"When a woman acts in a responsible way, doing what she believes is in her best interests and the best interests of her family, she's being moral.”

“I believe women shouldn't have to explain to governments, religious groups, those of another opinion or the patriarchy at large that they've made a decision to deal with the condition of their own bodies.”

Dr. Harris indicates, correctly, that the same standards of conscience should be applied equally: “Certainly, if abortion providers’ conscience-based claims require scrutiny, so do conscience-based refusals, to ensure that refusals are indeed motivated by conscience and not by political beliefs, stigma, habit, erroneous understanding of medical evidence, or other factors.”

There are many people opposed to abortion who are sincere in their opposition and motivated by conscience. Beyond that, e.g., refusing to fill contraceptives, is getting to the point that maybe it is time to seek a new field of work. But to imply that concern for women and conscience only apply to abortion and contraception opponents and deny the conscience and morality of those who provide such care is unethical and dishonest. George Tiller’s motto was “Trust Women”, but many people don’t.

Another voice from “Why I Provide” says it simply and profoundly:

"I provide abortions because I value the life and health of my patients, and because when abortion is not legal, safe and accessible, women suffer and die.”

That is a conscience clause.

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[1] Harris, L. “Recognizing conscience in abortion provision”, NEJM 13Sept2012;367(11):891-3.

[2] Joffe CE. Doctors of conscience: the struggle to provide abortion before and after Roe v. Wade. Boston: Beacon Press, 1995.