The Truth about Massachusetts Health Reform

If your view of Massachusetts health reform came from the Republican presidential debates you'd think the program is a catastrophe. That's baloney.

A recent article in Health Affairs shows it's a measured success, a work in progress.

An ongoing annual survey of 3,000 randomly selected households shows that uninsurance among nonelderly adults - the group most vulnerable to being uninsured - is steady at 94-95%, the highest insurance rate in the nation.  Emergency room visits for nonemergency conditions has declined. From 2006, when the reform went into effect, to 2010, self reported "excellent" health status improved from 59.7% to 64. There's been no drop in the rate at which employers offer insurance to employees. Two thirds of the population continue to support the program, though political bashing of "Obamacare" and "Romneycare" has led to an increase of those who are opposed to it from 17% to 27%.

As I see it, the key lesson from Massachusetts health reform is the process by which it launched and is currently handled. Prior to passage of the 2006 law, there were several years of discussions, reports, conferences, committee meetings, and more. From this combination of education, argument and deliberation, what emerged was a consensus that government, employers, and individuals had to share responsibility for making things better. And, at least as important, all that interaction created some trust among the key parties and a culture of civility that is all-too-lacking in the pathetic national non-dialogue on federal reform.

In terms of shared sacrifice: individuals accepted a mandate that we be insured; employers accepted a requirement that they provide insurance or pay into a state pool; and the state accepted responsibility for subsidizing low income folks and for creating a mechanism - the Connector - to administer the new forms of insurance that were made available.

Those leading the reform process decided to defer the most challenging aspects of reform - (1) cost containment and (2) delivery system reform, until almost everyone in the state was insured. The agenda for Massachusetts has now shifted to those two issues.

In 2012, Governor Patrick, a Democrat, is using the same process that Governor Romney, a Republican, used in 2006 - orchestrating broad stakeholder participation, and using the bully pulpit of the state house. Instead of bashing insurers for the health cost trend the Governor is directing insurers to drive hard bargains. This repositions the insurer from being the enemy of the public to being the agent of the public. The fact that more than 90% of the Massachusetts insurance market consists of locally based not-for-profits makes this a viable strategy for the state.

I'm deeply skeptical about the readiness of the U.S. to come to grips with health costs, but I'm guardedly optimistic about Massachusetts. This year rates in the small group market are going up by only 1.8% (see here and here). Fee-for-service is diminishing - 1.2 million folks (20% of the insurance market) are already in programs with global budgets. And from conversation with friends who practice in different hospitals and medical groups I know that the medical community is working on reengineering clinical systems to produce equal or better results at a lower cost.

If the Supreme Court finds the Accountable Care Act constitutional and it becomes clear that the law will stand, it will be easier for other states to do the kind of long term work with messy and difficult problems that Massachusetts is doing. Hysterical tantrums about "Obamacare" are getting tiresome!

(If you're interested in Mitt Romney's role in launching the Massachusetts reform process, see this excellent New Yorker article.)

The ethics of writing about children with mental illness

I was recently asked about the ethics of writing about children and adolescents with mental illness. I've edited the actual question to preserve privacy:

I've been asked to consider writing a book about a parent and a mentally ill child. I'm convinced that the story needs to be told; but I'm not sure how to do it ethically. We don't want to re-traumatize the child, who is unable to give informed consent to interviews or to decide about making the story public, and probably won't be able to give informed consent even after reaching the age of majority.

We want to be responsible -- to respect the child's privacy and to do no harm. But we want to validate the experiences of other parents who are living through this with their children; to improve public understanding of the condition; and to advocate for the kids and families who are struggling. They're suffering in silence right now.

Because of the nature of the disorder and the behaviors that children with the condition display, the "commercial" literature that's available pushes the boundaries of good journalism. So much is changed to protect the children's privacy that it damages the credibility of the writing. But it's impossible to guarantee privacy if we write honestly. If we describe even one event exactly as it happened, SOMEBODY is going to recognize the child.

What an important question this is! It poses a fundamental "good vs good" conflict: the value that the story might have for other parents and folks who make policy relevant to the child's condition vs the child's right to privacy and protection as a minor.

Apart from how individuals will weigh these values, cultures themselves vary. Many years ago I joined a psychiatrist in India at a session in a clinic serving the poor. I knew him to be a kind and considerate man of great personal and professional integrity. He asked patients who spoke English to "talk with the doctor who is visiting with me from the United States." After an extended discussion with a couple I asked my host if it would be acceptable for me to ask for their permission to take a photograph of them. To my astonishment, my host responded - "just go ahead - you don't need to ask permission." (I wasn't comfortable doing this and put aside the photograph idea.) Subsequently I experienced the same cultural perspective in settings where I was the only Caucasian - people sometimes took photographs of me as an interesting phenomenon.

My reaction to the question is unambiguous. For me, the child's interests come first. I advised writing a well-disguised version of the story that met my rule of thumb - the child's neighbors, teachers, and friends shouldn't recognize who the story is about, and the child, now or at an older age should feel respected by the way she or he is written about. That level of disguise may diminish the value of the story for other parents or policy makers, but in my view that's the correct trade off among values.


On World AIDS Day in 2005 I was in Madurai, India. A man disguised as a giant condom was circulating in the crowd. When I pointed my camera at him he indicated that I should stand next to him and be part of the photo. Perhaps he felt that I should collaborate with him and not objectify him. FYI, here's the photo:
 

Kristin Barker, a sociologist at Oregon State University, has a fascinating, fun to read article in a recent issue of Social Science & Medicine - "Listening to Lyrica: contested illnesses and pharmaceutical determinism."

In my psychiatric practice I was often asked to see patients with mysterious symptoms. Many of the patients resented being asked to see a psychiatrist, feeling they were being sloughed off as whiners, hypochondriacs, or malingerers and told that their symptoms were "all in the head." There was no doubt that they were suffering. But what were they suffering from?

Some of these patients had been diagnosed with fibromyalgia syndrome, a condition of unkown etiology characterized by chronic widespread musculoskeletal pain, multiple tender points, sleep disturbance, fatigue, and other "non-specific" symptoms. In June 2007 the FDA approved an antiseizure medication - appealingly branded as "Lyrica" - for treatment of fibromyalgia. Having a drug officially endorsed as treatment for their condition went a long way towards validating the symptoms as reflecting a "real" illness.

Barker makes three key points:

• Having a treatment strengthens belief in the disease. If there's a pill that helps, the person must be ill. From a sociological perspective, Lyrica wasn't simply treating a condition, it was validating the condition as real!
• Direct to consumer advertising (DTCA) has a powerful impact on social behavior. Insofar as Lyrica ads reduced the blame patients often experienced, the ads were a boon.
• But the ads, which helped make Lyrica a billion dollar blockbuster drug for Pfizer, did so in part by showing glamorous women (actresses) supposedly with the condition, and by portraying the drug as a magical cure. In real life Lyrica rarely acts in the magical way the ads suggest. Some women with the condition felt that the ads led to their being blamed for not getting fully well as the actress portrayed. (For an example of such an advertisement, see here.)

Barker concludes that Lyrica has been a decidedly mixed blessing. It contributed to diminished blaming of the victim. It gave physicians and patients an additional intervention to try. But it fostered false hopes and led to further medicalization - women who might have recovered from a bad spell without diagnosis or medical intervention were persuaded that they had an illness and needed a drug. And when Lyrica didn't perform as the ads suggested it would, some women were blamed for refusing to get better.

(For another post about blaming the victim, see here.)

Bereavement is Sad, but it's not a Depressive Illness

The status of bereavement in the next edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders ("DSM") is in the news again.

DSM IV, first published in 1994, defines "major depression" by a constellation of symptoms. Depressed mood and/or loss of pleasure capacity must be present, along with symptoms like sleep disturbance, fatigue, restless agitation or a feeling of being slowed down, loss of appetite and diminished ability to concentrate. The symptoms must represent a change from prior status and be present for at least two weeks. All of these symptoms may be present in normal bereavement.

Crucial for the current controversy, DSM IV included what has been called a "bereavement exclusion." The diagnosis of depressive illness is not made if:

The symptoms are not better accounted for by Bereavement, i.e., after the loss of a loved one, the symptoms persist for longer than 2 months or are characterized by marked functional impairment, morbid preoccupation with worthlessness, suicidal ideation, psychotic symptoms, or psychomotor retardation.

The DSM V committee that is working on criteria for major depression is proposing to drop the bereavement exclusion, largely based on research taken to imply that the exclusion isn't empirically supported. In a rather technical article, Jerome Wakefield and Michael First from NYU and Columbia, pick apart that research and argue that the exclusion should be retained.

This isn't a matter of arcane definitions and paperwork. Dropping the exclusion will lead to an epidemic of overdiagnosis of depressive illness when what's really happening is painful grief. Overdiagnosis will have harmful consequences, including:

• Medication will often be prescribed. While anti-depressants are relatively well tolerated, all medications can cause harm through side effects.
• Grief typically resolves over time. When this happens, at least some of those taking medication will attribute their improvement to the drug. This can alter self image - "I fell apart when X died - thank God the medicine and the doctor got me out of it."
• Many will stay on the drug and attribute their ongoing wellbeing to its continued use, at the cost of recognizing their own capacity to recover from a painful loss and the potential side effects from long term drug use.
• Even if no harm accrues from diagnosis and medication use, unnecessary interventions will add unnecessary costs for individuals and the wider community.
• And, for all those suffering from normal, though painful, grief, medicalization of the condition may distract from normal healing processes - tears, preoccupation with the loss, rituals, and more.

Dr. Kenneth Kendler, a member of the DSM V work group, argues that these fears aren't warranted:

...diagnosis in psychiatry as in the rest of medicine provides the possibility but by no means the requirement that treatment be initiated. Watchful waiting is important tool for all skilled clinicians. As a good internist might adopt a watch and wait attitude toward a diagnosable upper respiratory infection assuming that it is unlikely to progress to a pneumonia, so a good psychiatrist, on seeing an individual with major depression after bereavement, would start with a diagnostic evaluation...As with the psychiatric response to the other major stressors to which we humans are all too frequently exposed, good clinical care involves first doing no harm, and second intervening only when both our clinical experience and good scientific evidence suggests that treatment is needed.  

"Watchful waiting" is indeed an important tool for skilled clinicians. If clinicians, the public, and pharmaceutical companies, all conducted themselves in accord with Dr. Kendler's wise precepts, the bereavement exclusion wouldn't matter.

But, alas, this prudent approach to clinical practice is in too short supply in American medicine. We're an activist society. Watchful waiting in the face of a serious diagnosis is almost un-American. That's why "watchful waiting," the wisest approach for many men with early prostate cancer, has had to be rebranded as "active surveillance."

If the bereavement exclusion is dropped, it's only a matter of time until media will be flooded by pharmaceutical advertisements targeted at individuals who have suffered loss and their well intentioned families.

Since the American Psychiatric Association agrees with Dr. Kendler that "good clinical care involves first doing no harm," DSM V should retain the bereavement exclusion!

Health Care as a Source of Ill Health

Zeke Emanuel, who is becoming the national educator-in-chief about health care in his new role at the University of Pennsylvania, preaches an excellent sermon in today's New York Times - "What We Give Up for Health Care."

Zeke's point is obvious, but, amazingly, it's one our political process has been oblivious to: what we spend on health care we can't spend for other purposes. That creates an ethical imperative to consider opportunity costs for health care expenditures. The proper question is - "does this health care expenditure create more human benefit than other possible expenditures?" - rather than the one we typically ask - "does this health care expenditure produce any benefit, however small, for the patient?" Zeke shows how health care costs have acted as an economic cancer, invading and obliterating investments we would otherwise make in wages (which have been stagnant or declining), education, and other crucial components of our lives.

As important as medical care can be, income and education are also crucial determinants of health. When we reduce wages to pay for health insurance, and reduce educational investments at every level to pay for Medicare and Medicaid, we're reducing overall health and well-being. The real "death panel" is our reflexive investment in medical interventions that produce minimal or no benefit at the cost of investments that would do more for us!

Should 14 Year Olds be Sentenced to Life in Prison?

Rachel Aviv, who wrote a superb New Yorker article about a woman in New Hampshire who - guided by psychotic delusions - starved to death, has written another gem, this one in the January 2 New Yorker: "No Remorse: Should a teen-ager be given a life sentence?"

On March 6, 2010, Dakotah Eliason shot and killed his grandfather Jesse Miles while Jesse was asleep. For several hours he contemplated the choice between suicide and murder. Dakotah was unhappy about the breakup with a girlfriend, but had not otherwise  seemed depressed.  He loved Jesse and had had no conflict with him. He finally settled on murder. Dakotah was fourteen at the time.

Arthur Cotter, country prosecutor in the area of rural Michigan where Dakotah lived, ruled that Dakotah should be tried for first degree murder as an adult. He based the decision on what he interpreted as Dakotah's "utter lack of remorse." In Michigan conviction for first degree murder carries a mandatory life sentence with no possibility of parole. After three hours of deliberation the jury found Dakotah guilty.

The Michigan appellate defender's office, which represents indigent clients who cannot afford private counsel, is appealing Jesse's conviction, arguing that he received ineffective counsel at the original trial.  In particular, the appeal argues that Dakotah's counsel failed to draw on "So Young and So Untender: Remorseless Children and the Expectations of the Law" - an extraordinary study by Emory  Professor Martha Grace Duncan of how courts punish juveniles for not showing a stereotypical form of remorse.

Professor Duncan provides seven case studies of juveniles who committed murder but did not display conventional remorse. She argues that courts erroneously interpret lack of remorse as a sign of depravity, warranting the kind of penalty Dakotah received. This isn't simply an "academic" study. Here's how it opens:

The morning after my father’s suicide, I went to my classes at Columbia University as usual, wearing a hot-pink, summery top and a pink and white floral skirt. In the elevator of the International House where I lived, a friend who had been with me when I received the news looked at me curiously. No doubt he wondered why I was still in New York and on my way to school – why I showed no signs of grief.

Actually, I showed no grief because I felt none, and did not for a long time. It was a year before I cried over my father’s death, four years before I began, in therapy, to talk to someone about it. When I did begin to cry, I could not stop...

Fortunately, no legal ramifications flowed from my earlier failure to exhibit sadness, for I stood accused of no crime. But this experience of being unable to show or even feel “appropriate” sorrow over my father’s death has resonated for me with many legal cases. It inspired my interest in, and doubts about, the uses of remorse in juvenile and criminal law.

Professor Duncan's article helped me and my wife understand an experience that had puzzled us since I was in residency and she was in graduate school. We went to dinner at a good friend's apartment. We drank lots of wine and listened to songs by a hot new group - the Rolling Stones. It was only as we were leaving that our friend mentioned that her father had died that morning. During the evening we'd seen no signs of grief.

In the New Yorker article, Rachel Aviv lays out the alternative approaches the law has taken towards juvenile offenders. In states guided by the ethic of rehabilitation, Dakotah would be released when he turned 21. In Michigan, which is guided by the ethic of protecting society and punishing "depravity," Dakotah faces life in prison with no possibility of parole.

Unfortunately there is some wisdom in each of these perspectives, which creates a problem for our preference for moral certainty. For some "Dakotahs," the crime would, in retrospect, be an aberrant event followed by an exemplary life. For other "Dakotahs," the crime would be followed by other violent events - a life of incorrigability.

In my view, automatic release at 21 and automatic life imprisonment with no opportunity for parole, are both wrong policies. Rehabilitation, "going straight," is possible, but in no way inevitable. Likewise with depraved incorrigibility. Automatic release at 21 fails to protect society. Life imprisonment fails to protect the individual who no longer poses a threat.

If we allow for this kind of uncertainty we will inevitably make mistakes. Some "Dakotahs" will be released, ostensibly rehabilitated, and go on to commit further serious crimes, as happened with Jack Abbot, author of In The Belly of the Beast. Other "Dakotahs" will be kept in prison when they would have otherwise been positive contributors to society.

Rachel Aviv's writing teaches us that we can't avoid uncertainty other than by embracing falsity. The prosecutor argued that Dakotah is a depraved killer. Maybe he is, but there's absolutely no way of knowing it. Psychiatrists argued that Dakotah had bipolar illness, despite what appears to be lack of evidence for the condition.

As I was mulling over how to conclude this post, a couplet by Ogden Nash popped into mind: "Candy is Dandy...But liquor is quicker." Nash was writing about romantic seduction. Without labelling the theme, Aviv is writing about intellectual and moral seduction. Depravity and exoneration are seductive simplicities.

But they're wrong!

Medical Ethics and Blaming the Victim

A article on female genital pain got me thinking about one of my pet peeves in medicine – blaming the victim.

The condition – vulvodynia - was often blamed on the woman, as in saying “it’s a fear of sex,” “it’s in your head,” or “it’s classical hysteria.” Now it turns out that identifiable, but subtle, anatomical factors appear to cause it. Treatment has improved. Blame is diminishing.

I first heard clinical teachers say things like “the patient failed chemotherapy so we decided to try…” when I was in medical school. The people saying this were typically devoted caretakers. The implication that the treatment didn’t work because the patient “failed” was rooted in health jargon, not their hearts.

But the “patient failed” phrase isn’t just a piece of sloppy grammar. It shows something about the culture of health care, at least in the U.S.

The good thing the phrase reflects is just how responsible caretakers feel for patients. If the treatment doesn’t work we tend to feel guilty, even when we’ve done the best that can be done.

The bad thing the phrase reflects is our collective cowardice. Instead of acknowledging the sad fact that medicine, while powerful, is limited, we blame the patient. Medicine didn’t fail. The patient did.

Looking into what has been written about blaming the victim I came upon this moving 2004 exchange in The Oncologist:

TO THE EDITOR:

As a lung cancer patient and advocate, I have been enormously heartened the past few months with the recent discovery of the epidermal growth factor receptor (EGFR) mutation and its immediate and long-term implications for improved treatment and extended survival for people with lung and other cancers.

In reading about the promise and potential of this new finding in Dr. Bruce Chabner’s editorial, "The Miracle of Iressa" [1], I was jolted from my excitement by one particular phrase. Dr. Chabner stated that "...patients will continue to receive Iressa when they fail chemotherapy." When they fail chemotherapy? Have the patients really "failed" when chemotherapy drugs do not work? Of course they haven’t. So why use a phrase that implies blame?

Dr. Chabner, whom I know to be an excellent and sensitive oncologist, is far from alone in expressing the failure of cancer treatment in a less than patient-friendly way. This unfortunate convention is used in the medical literature, at professional conferences, and not surprisingly, in the clinic. It is common for oncologists to tell patients that they "failed drug X." By telling patients they failed to respond to treatment, doctors may increase the guilt that many patients already struggle with as a result of their cancer diagnoses. For others, like me, it becomes an annoying refrain. At minimum, it puts emotional distance between doctor and patient and undermines the doctor-patient relationship. Just imagine under the same circumstances if the patient said to the doctor, "You failed to give me the right drug to treat my cancer." The question isn’t who failed, but what failed.

I ask Dr. Chabner and The Oncologist readers to be mindful of the language used when discussing the failure of therapies in cancer patients. Something as simple as, "Drug X didn’t work for you, maybe this one will," is one example. There are numerous ways to express the failure of cancer treatment without failing the patient, too.Sincerely,

Karen Parles, MLS
Editor, www.LungCancerOnline.org
Executive Director, Lung Cancer Online Foundation

FROM THE EDITOR:

Our reader, Karen Parles, points out an important, and unfortunate, mistaken use of the word "failure" in my recent editorial, describing a patient’s lack of response to Iressa therapy [1]. The failure of treatment is not the patient’s fault in any regard. The fault lies with the current state of science, and our understanding of the disease. The convenient phrase "failure," so often used in our society to describe an unhappy outcome beyond the control of the individual, has no place in the context of unsuccessful treatment of a disease such as cancer. I apologize for myself and my colleagues, who so often confuse outcome with intent, and I thank Karen Parles for raising our consciousness to the all-important use and impact of our words.

I assure her that I have expunged "that phrase" from my vernacular ... and I urge my colleagues to do likewise.

Bruce Chabner, M.D.
Editor-in-Chief, The Oncologist
Clinical Director, Massachusetts General Hospital Cancer Center.

Hats off to Dr. Chabner! I hope our colleagues follow the example he's set.

Raising the Age for Medicare Eligibility - First Prize Dumb Idea

This week the Congressional Budget Office released a report on proposals to raise the age of eligibility for Medicare and Social Security.

The CBO concludes that raising Medicare eligibility to 67 would reduce federal spending by $148 billion between 2012 through 2021. By 2030, Medicare's net spending would be reduced by 5% - 4.7% of GDP rather than 5%. Those numbers sound good.

But reducing federal expenditures doesn't reduce the need for medical care. Some lucky folks (I'm in that category) (a) have employment that provides health insurance and (b) are happy to continue working. Some who would rather retire will continue to work, increasing health care costs for their employer (and fellow employees). Some will scramble to find alternatives which will cost them more than Medicare would. And some will become uninsured, at an age when this is progressively risky. Overall costs - to individuals, employers and other government programs would probably go up more than the $148 billion reduction in Medicare outlays.

The CBO does not comment on the fact that employers are not clamoring for ready-to-retire employees to stay on the job simply to avoid being uninsured.

Raising the Medicare eligibility age isn't meaningful cost reduction - it's simply a form of hot potato, dumping the costs into other accounts. It intensifies the fragmentation of our health system, and worsens overall quality of care.

In my view, the proposal is born out of despair about achieving constructive Medicare reform in which health professionals, patients and families collaborate on behalf of improved care (basically more compassion and less technology) and reduced costs. From 35 years of practice in a not-for-profit HMO setting I know this kind of collaboration is possible. But it requires a spirit of cooperation and trust that is not easy to find in our toxic political environment.