Notes on the Social History of American Medicine, Self Reliance and Health Care, Today

Over my vacation I read a bit on the history of health care in the United States. The Social Transformation of American Medicine, by Paul Starr, was first published in 1982. The author, a professor of sociology and public affairs at Princeton, gives a fascinating, relevant account in two chunks. In the first section, he details the rise of professional authority among physicians in the U.S. In the second part, he focuses on the relationship of doctors to corporations and government.

I couldn’t put this book down. Seriously, it’s a page-turner, at least in the first half, for anyone who cares about medical education, doctors’ work, and how people find and receive health care. In an early chapter, on medicine in colonial and early 19th Century America, Starr recounts the proliferation of medical schools and doctors, or so-called doctors, in the years after 1812. One problem of that era, besides a general lack of scientific knowledge about disease, was that it didn’t take much to get a medical degree. State licensing laws didn’t exist for the most part, and where they did come in place, such as in New York City, they were later rescinded. Then as now, many practicing folks didn’t want regulations.

Doctors were scarce and not always trustworthy. People, especially in rural areas, chose or had to be self-reliant. Many referred to lay sources for information. Starr writes of the “domestic” tradition of medical care:

…Women were expected to deal with illness in the home and to keep a stock of remedies on hand; in the fall, they put away medicinal herbs as they stored preserves. Care of the sick was part of the domestic economy for which the wife assumed responsibility. She would call on networks of kin and community for advice and illness when illness struck…

As he describes it, one book – William Buchan’s Domestic Medicine, was reprinted at least 30 times. It included a section on causes of disease and preventive measures, and a section on symptoms and treatments. By the mid 19th Century a book by John C. Gunn, also called Domestic Medicine, or Poor Man’s Friend…offered health advice in plain language.

Starr considers these and other references in the context of Protestantism, democracy and early American culture:

…while the domestic medical guides were challenging professional authority and asserting that families could care for themselves, they were also helping to lay the cultural foundations of modern medical practice – a predominantly secular view of sickness…the authority of medicine now reached the far larger number who could consult a physician’s book.

Reading this now, I can’t help but think of the Internet and other popular and accessible resources that challenge or compete with doctors’ authority. Other elements of Starr’s history pertain to current debates on medical education, credentialing and distribution of providers.

Just days ago, for example, the New York Times ran an editorial on a trend of getting Health Care Where You Work. The paper reported on Bellin Health, an allegedly non-profit entity, that designs on-site clinics for medium-sized companies. “It has managed to rein in costs while improving the availability and quality of care — in large part by making it easier for patients to see nurses and primary care doctors,” according to the Times opinion. The clinics are “staffed part-time by nurses, nurse practitioners or physician assistants, who handle minor injuries and illnesses, promote healthy living and conduct preventive screenings.”

The editorial touts Dartmouth Atlas data and other high marks for the care Bellin provides at low costs to possibly happy workers and their satisfied employers. Still, it’s not clear to me that an on-site clinic would be a great or even a good place to seek care if you had a subtle blood disorder or something like the newly-reported Heartland virus.

On reading the editorial on delivering health care to the workplace, I was reminded of Starr’s tale of the development of clinics at railroad and mining companies in the first half of the 20th Century. This happened mainly is rural areas where few doctors lived, at industry sites where injuries were frequent. The workers, by Starr’s account, were generally suspicious of the hired physicians and considered them inferior to private doctors whom they might choose if they became ill. They resented paying mandatory fees to support those on-site doctors’ salaries. Doctors’ groups, like the AMA, generally opposed and even ostracized those “company doctors” for selling out, or themselves, at a lower price.

The second half of the Social Transformation, on failed attempts at reform before 1982, is somewhat but not entirely outdated in light of Obamacare and 40 years intervening. But many of the issues, such as consideration of the “market” for doctors and the number of physicians we need, relate to the papers of this week including an Economix column by another Princeton professor, Uwe Reinhardt, who puts forth a view that, well, I don’t share. As I understand his position, Reinhardt suggests that there may be no real shortage of doctors, because physicians can always scrunch their workloads to fit the time allotted. But that’s a separate matter…

In sum, on the Social Transformation, today: Worthwhile! Curious! Pertinent! Starr’s book is chock full of history “lessons” that might inform medical practice in 2012. And I haven’t even mentioned my favorite segments – on prohibiting doctors’ advertisements (think websites, now), the average workload of physicians before 1900 (think 5 or so patients per day), and the impact of urbanization on medical care and doctors’ lives and specialization.

Lots to think about, and read.

All for now,

ES

 

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Counterfeit Drugs, A New Concern for Patients

This week the FDA issued an alert about fake Avastin. The real drug is a Genentech-manufactured monoclonal antibody prescribed to some cancer patients. Counterfeit vials were sold and distributed to more than a dozen offices and medical treatment facilities in the U.S. This event, which seems to have affected a small number of patients and practices, should sound a big alarm.

Even the most empowered patient – one who’s read up on his drug regimen, and engaged with his physician about what and how much he wants to receive, and visited several doctors for second opinions and went on-line to discuss treatment options with other patients and possibly some experts – can’t know, for sure, exactly what’s in the bag attached to his IV pole.

Counterfeit Avastin (images from FDA)

Scary because patients are so vulnerable –

The problem is this. If you’re sick and really need care, at some point you have to trust that what you’re getting, whether it’s a dose of an antibiotic, or a hit of radiation to a bone met, or a drug thinner, is what it’s supposed to be. If vials are mislabeled, or machines wrongly calibrated, the error might be impossible to detect until side effects appear. If you’re getting a hoax of a cancer drug in combination with other chemo, and it might or might not work in your case, and its side effects – typically affecting just a small percent of recipients – are in a black box, it could be really hard to know you’re not getting the right stuff.

What this means for providers is that your patients are counting on you to dot the i’s. Be careful. Know your sources. Triple-check everything.

The bigger picture – and this falls into a pattern of a profit motive interfering with good care – is that pharmacists and doctors and nurses need time to do their work carefully. They need to get rest, so that they’re not working robotically, and so that they don’t assume that someone else has already checked what they haven’t. And whoever is buying medications or supplies for a medical center, let’s hope they’re not cutting shady deals.

This issue may be broader than is known, now. The ongoing chemo shortage might make a practice “hungry” for drugs. And with so many uninsured, some patients may seek treatments from less-than-reputable infusion givers. The black market, presumably, includes drugs besides Avastin.

If I were receiving an infusion today, like chemo or anesthesia or an infusion of an antibody for Crohn’s disease, I’d worry a little bit extra. I mean, who will check every single vial and label and box? Think of the average hospital patient, and how much stuff they receive in an ordinary day – including IV fluids that might be contaminated with bacteria.

It’s scary because of the loss of control. This circumstance might be inherent to being a patient – in being a true patient and not a “consumer.”

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Should You Tell Your Employer When a Loved One Is Ill?

An article caught my attention in the September AARP Bulletin:

The Caregiver’s Dilemma considers the 61.6 million people in the U.S. who care for older relatives or friends. People with jobs are, understandably, unsure if they should let their boss or supervisor know they’re caring for someone who’s sick. This indirect cost of illness and aging in America is said to tally $33.6 billion each year.

The pressure on workers is tough, writes Sally Abrahms:

Many employees are in that elder care-giving boat, yet workers with work-family conflicts are often reluctant to raise the issue with superiors. They fear they’ll be viewed as not committed enough, or receive bad year-end reviews. They may also think that discussing their personal life is unprofessional or sense resentment from colleagues and the boss, who may have to pick up the slack during their absences…

The article reminded me of the dilemma faced by cancer patients, and by the parents or children of anyone who’s got a serious diagnosis and needs help. How much to tell the boss?

It’s a tough economy.

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Reducing Cancer Care Costs by Comparative and Cost-Effectiveness Research (CER)

Well, it’s the day after Labor Day, time to resume our discussion of Bending the Cost Curve in Cancer Care.

We’ve reached the end of the list, on ideas to reduce oncology costs put forth by Drs. Smith and Hillner in the May 25 issue of the NEJM. Really this 10th and final point intended for oncologists is two-in-one: “The need for cost-effectiveness analysis and for some limits of care must be accepted,” they chart. So doctors should embrace studies of comparative effectiveness and cost effectiveness.

Hard to argue with reason – they’re correct, of course. They write:

… The national imperative is to empower a transparent, acceptable, equitable, politically independent agency for guidance in making tough choices in the public interest so that doctors do not have to make them at the bedside.60 Ultimately, we will have to make decisions based on some criteria, and comparative-effectiveness61 and cost-effectiveness62 analyses are good ways to align resource use with the greatest health benefit.

This sounds great, and is probably right, but I don’t think it’s realistic.

A more detailed consideration on the issue of cost-effectiveness, IMO, came out a few weeks later, also in NEJM: Comparative Effectiveness Research and Patients with Multiple Chronic Conditions. This piece, by Drs. Mary Tinetti and Stephanie Studenski, considers the problematic application of CER in the real world.

The problem with CER, these authors emphasize, is that most medical patients have more than one condition and many are elderly; clinical trials tend to include, exclusively, patients who don’t have more than one major illness are relatively young. This limits the physicians’ abilities to apply data to their patients.

What’s more, reported results tend to focus on central results, but most patients fall elsewhere on measured curves:

The heterogeneity of treatment effects will further complicate CER. Although studies typically report average effects, most participants experience more or less benefit and harm than average. Such heterogeneity results from variability in patients’ initial level of risk for a given outcome, in their responsiveness to treatment, and in their vulnerability to adverse effects — issues with particular relevance to patients receiving treatment for multiple coexisting conditions.

The authors, who recognize the need for better research to support treatment decisions, write that “CER will probably accelerate the movement toward outcome-driven decision making, reimbursement, and quality assessment. As this shift occurs, we must move toward a focus on cross-disease, “universal” outcomes in research and clinical care.” Their thesis gets more abstract (which I admire), but meets a wall or two: the lack of consensus on a set of universal health outcomes, different parameters measured by the likes of the VA administration, CMS, the FDA, NIH and other huge agencies.

They make a practical suggestion, about the need for head-to-head comparisons in CER:

… interventions such as exercise that affect multiple conditions simultaneously should be a high priority…Studies should include assessment of the burden of treatments for patients and families. Another CER priority should be the examination of treatments for common pairs of diseases in which treatment of one may exacerbate the other. For example, when hypertension and osteoporosis coexist, what treatment best minimizes the risk of adverse cardiovascular outcomes without increasing the risk of falls and fractures?

All of this sounds reasonable to this patient-doctor, but it’ll take a lot of time and money to accomplish effective CER that encompasses the needs and conditions of sufficient numbers of patients in disease and age combinations to power any meaningful studies. You have to wonder at some point, as I have been lately, is all this clinical research worth the effort?

That said, I respect this paper‘s conclusions on CER:

Researchers have largely shied away from the complexity of multiple chronic conditions — avoidance that results in expensive, potentially harmful care of unclear benefit. We cannot improve health care’s quality, effectiveness, and efficiency without addressing its greatest consumers. Development and testing of innovative approaches to care for patients with multiple chronic conditions could prove the most lasting legacy…

My bottom line: CER, and consideration of treatment costs, should underlie reduction of cancer care costs in the near and long-term future. As to how we accomplish sufficiently careful research, and avoid inappropriate cutting of helpful treatments – especially those that prove beneficial for some younger and otherwise healthy cancer patients – is one of the two main challenges ahead.

(The other big challenge, mainly a moral one, is the subject of rationing, to which Smith and Hillner allude but don’t detail, and which subject I won’t address in this post.)

Meanwhile: thorough, apolitical, nuanced and transparent reporting of trial results would help doctors, patients and the general public understand what information is available.

Finally, in the next month or so I will look back over the full, provocative and generally excellent list by Drs. Smith and Hillner, and see what holds hope for the future of cancer medicine. What’s clear is that the path ahead mandates clear thinking through some very tough clinical decisions.

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Reducing Costs by Holding Back on Chemotherapy for Cancer Patients Who are Frail

This is the fourth in a series of posts on Bending the Cost Curve in Cancer Care, by Drs. Thomas J. Smith and Bruce E. Hillner, in a recent NEJM health policy piece. The authors’ third suggestion: to limit chemotherapy to patients with good performance status, with an exception for highly responsive disease, is surely one of the most controversial.

What they’re suggesting is a simple rule: “Patients must be well enough to walk unaided into the clinic to receive chemotherapy.” There are necessary exceptions, they point out, such as cancer patients disabled by another medical condition but who otherwise can carry out daily activities with relative normalcy. (I’ll offer an example: say a 50-year woman with multiple sclerosis who is wheel-chair bound but otherwise essentially well; she would be a candidate for treatment in this scenario.) But in general the authors would hold off on chemotherapy for cancer patients with a limited performance status  – a measure that oncologists use to assess how well, or disabled, a person is in their capacity to work, perform ordinary daily activities and care for him or herself.

I’m not sure I agree with the “walking” threshold, or ECOG performance status 3 or below, as the authors describe: “meaning that they are capable of only limited self-care and are confined to a bed or chair more than 50% of waking hours.” These criteria are subjective and problematic. But I do think the authors are onto a central, unavoidable issue in reducing health care costs. That is by limiting care, i.e. by rationing.

For elderly patients with cancer, especially for those who have significant other illnesses, it may not be appropriate for doctors to give chemotherapy and other, non-palliative cancer treatments. The authors don’t (dare) advise a particular age cut-off for therapy; they suggest using performance status criteria. They conclude this section of the paper on cutting cancer care costs with this statement:  “Implementation of such a simple threshold could dramatically decrease the use of chemotherapy at the end of life.”

The authors are right, that we (oncologists and other doctors) shouldn’t be in the business of routinely giving aggressive treatments to patients who are very old and frail, who are more likely to suffer harms of treatment than potential benefits. Not just because we can’t continue driving up U.S. health care costs indiscriminately, but because when very frail, elderly patients are given chemotherapy they’re less likely to recover after treatment. By not saying “no” to patients who are too fragile for a requested intervention, or by simply treating patients who are so feeble or demented, or both, that they’re unable to say “no” for themselves – such as sometimes happens in nursing homes and other chronic care facilities, doctors may cause more harm than good.

Some readers of this blog may be wondering how I can reconcile this position with what I’ve said about access to Avastin for women with advanced BC. In my opinion, patients’ age and, broadly, their functionality – if they can think and communicate seems at least as relevant as whether they can walk – should be factored into the risk/potential benefits analysis of almost any medical treatment.

So if we’re going to consider restricting cancer drugs and interventions based on cost, indirectly or overtly, we should account for patients’ ages, the potential length and quality of life to be gained: If there’s a 50 year old patient who might benefit from a costly cancer treatment, it’s likely that person will benefit more from that drug than would a 70 year old patient, or a 90 year old patient. It’s also more likely, but not a sure thing, that a younger, otherwise healthier patient will tolerate a given treatment with fewer side effects.

Hard to know where and how to draw the lines.

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Opening Up a Dialogue on the R-Word

Today a short article in the NY Times, New Kidney Transplant Policy Would Favor Younger Patients, draws my attention to a very basic problem in medical ethics: rationing.

According to the Washington Post coverage, the proposal comes from the United Network for Organ Sharing, a Richmond-based private non-profit group the federal government contracts for allocation of donated organs. From the Times piece:

Under the proposal, patients and kidneys would each be graded, and the healthiest and youngest 20 percent of patients and kidneys would be segregated into a separate pool so that the best kidneys would be given to patients with the longest life expectancies.

This all follows last week’s front-page business story on the monetary value of life.

I have to admit, I’m glad to see these stories in the media. Any reasoned discussion of policy and reform requires frank talk on health care resources which, even in the best of economic times, are limited.

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