Health Care Organizational Ethics

The ethics of writing about children with mental illness

2012-01-30T19:00:00.000-05:00

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:

2012-01-28T13:22:00.000-05:00

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

2012-01-26T07:31:00.001-05:00

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

2012-01-22T09:31:00.003-05:00

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?

2012-01-16T10:46:00.001-05:00

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

2012-01-15T10:18:00.002-05:00

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

2012-01-12T08:00:00.000-05:00

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.

The Role of Will Power in Medical Care

2012-01-10T07:00:00.000-05:00

I've made a belated New Year's resolution - to read "Willpower: Rediscovering the Greatest Human Strength" - a book about how to make effective resolutions. I made my resolution while reading an article about it in a recent New York Times.

The basic ideas aren't rocket science. But they're practical, well articulated, and grounded in research:

Set a single clear goal - not an overwhelming program of total self-modification all at once.
Apply a strategic plan. The classic example is Odysseus. When he wanted to hear the sirens sing but to resist their charms he didn't just rely on will power - he had himself tied to the mast, and had his sailors put wax in their ears so they (a) could hear the sirens and (b) couldn't hear his demand to have the ropes taken off.
Develop a support team. Years ago a patient of mine described, with pleasure, how when he whined about stress in his AA group the group chanted, in unison, but with affection - "Tough Shit! Don't Drink!" Now, with the burgeoning of web supports, we can supplement the support process with social networking tools.
Monitor progress. Over the years there's been debate, for example, as to whether checking weight daily discourages would-be reducers, but evidence now suggests that for most people, regular feedback helps.
Don't overreact to lapses. The quality improvement mantra - "every defect is a treasure" - applies to managing ourselves. Falling off the wagon from time to time is almost inevitable. The key is to (a) learn what we can from the episode and (b) not interpret a lapse as a global defeat.
One day/hour/minute at a time. Years ago I asked a substance abuse counsellor colleague to join me and a patient who was struggling with alcoholism. She pointed out that if focusing on a day was too much, changing the time scale to "one hour at a time" or even "one minute at a time" could sometimes strengthen our capacity for control.
Give frequent rewards. Just focusing on control can be grim and joyless. Most of us need pleasurable payoffs for our efforts as well. The NYT article described a scale that will automatically make donations to a charity if we're meeting our weight target!

I applied most of these precepts in my work with patients suffering from chronic psychiatric conditions, but in a less systematic way than I would if I were starting over. The biggest change for patients and clinicians is the availability of all kinds of web-based tools that can supplement these ancient psychological insights. Scales can track and graph our weight. Pedometers count our steps. Social networking applications orchestrate our support group, supplement it when it needs augmentation, or replaces it altogether with responses we can design.

I ended my clinical practice four years ago, but at the turn of the year I received a series of communications from former patients. One asked me to buff up a voice mail message that has been a useful booster shot over time. Another asked for guidance about significant health-relevant New Year's resolutions. A third simply wanted to report on the status of the major areas we'd worked on for many years.

Many years ago, a patient whose well-being required strengthened assertiveness had identified the second serve in tennis as a valuable monitoring tool. This person's skills were excellent, but fear of double faulting led to a bloopy second serve. Some time after we ended treatment I was happy to receive a three word message: "Second serve humming!"

To care for patients with chronic conditions, we clinicians need to orchestrate the balance of patient self-management and the support and guidance we provide. This is a fascinating aspect of the art of medicine. It touches on the eternal philosophical conundrum of free will vs determinism. When we get the balance right it's usually clear and always satisfying.

A New Blog About Medicare

2012-01-08T11:53:00.001-05:00

I started a second blog on New Year's day - "Seniors for Medicare Reform." I'd been dithering about doing it for many months, and I couldn't bear the idea of entering 2012 without getting going.

I define the goals this way on the masthead:

"A voice for seniors who believe that health care should be guided by patients' values, that the care system needs more compassion and less technology, and that Medicare costs should be constrained for the sake of future generations."

Here's the thinking behind the goals for the new blog:

A voice for seniors: Politicians assume that all Medicare beneficiaries are "greedy geezers" monolithically fixated on keeping Medicare exactly as it is. I'm convinced there's a substantial number of beneficiaries who (a) cherish the security Medicare provides but (b) support what I would regard as "progressive" reforms. If I'm right, it's important for politicians to know it. Since I'm part of the Medicare generation, I'll generally refer to "we" and "us."

...who believe that health care should be guided by patients' values: I expect to write a lot on the new blog about the multitude of ways in which we physicians all-too-often guide ourselves by our perspectives rather than by those of our patients, in accord with the old saw that "the operation was a success, but unfortunately the patient died."

...that the care system needs more compassion and less technology: While cynical politicians scared us with "death panel" lies during the health reform debate, our more enduring fear is of overtreatment - of having things done to us that we don't want. The health policy wonks among us have written tomes about how Medicare policies and reimbursement schemes give too much incentive for technological interventions and too little support for compassion and care

...and that Medicare costs should be constrained for the sake of future generations: I've almost never heard anything different than this from Medicare age folks I've spoken with. But with varying degrees of vehemence we add our overall views of economic justice - "I'll be damned if I want to see Medicare cut in order to finance tax breaks for hedge fund managers/waste federal money on XYZ programs/spend trillions on wars we shouldn't have started/etcetcetc.

I'm decidedly a Massachusetts liberal, but I think there's potential for folks with a wide range of political attitudes to support the advocacy voice I'm hoping to promote. The effort may fizzle and go nowhere, but I want to give it a shot!

What Business Schools Can Learn from Medical Education

2012-01-02T17:31:00.000-05:00

The January-February issue of the Harvard Business Review has a column - "What Business Schools Can Learn from the Medical Profession" - by Harvard Business School dean Nitin Nohria.

Dean Nohria praises the way medical education addresses the "knowing-doing" gap by fostering hands-on experience in medical school and residency. In that spirit, this month, for the first time, Harvard will send 900 first year students to developing markets, where they will work in teams of six with a multinational or local company to develop a new product or service offering. At the end of each day students will gather with faculty members to discuss their experience.

I agree with the Dean's sense that immersion in field experience can be enormously educative. But the end-of-day sessions with faculty also play a crucial role. For the past ten years I've had the privilege of co-facilitating the "Patient/Doctor" seminar in the residency in Primary Care and Population Health that my department sponsors with the Brigham and Women's Hospital and Harvard Vanguard Medical Associates. This longitudinal seminar meets over the course of the three year program. Relationships with patients, self-understanding, professionalism and medical ethics are central topics for us.

Albert Schweitzer taught that “example is not the main thing in influencing others…it is the only thing.” Not every influence is positive, and our discussions often focus on how to deal with challenging circumstances, such as difficult patients or consultants who treat colleagues, students and patients badly. The faculty role in the HBS program will be crucial for helping students "process" what is sure to be a powerful but often confusing field experience.

Last year I reviewed notes I made (and kept) from clinical supervision I received as a resident more than forty years ago. Here's part of the note I sent to one of my teachers:

I've been reviewing notes that I kept from my residency at MMHC [Massachusetts Mental Health Center] 1965 - 1968. My clinical notes on the treatment of an especially difficult patient are interlaced with my summaries of what "Dr. X" said in supervision, and I wanted to tell you how excellent your teaching was. You consistently focused my attention on the therapeutic alliance and being very clear for myself and with the patient what the work to be done was. What I took from your teaching was practical, empathic and deep. Reading notes from 45 years ago is a fascinating experience, for a view of myself as a 26 - 29 year old and for a view of what psychiatry looked like through the lens of MMHC in the late 1960s.

Excellent teaching stays with us through a lifetime. Thank you for being such an important teacher and friend to me during those formative years of residency!

Here are some excerpts from the note I got back from Dr. X, who was living in a retirement community:

Good morning Jim! You have made my day with that message...I hope that over the years my teaching has at least held its own and not corroded; what I do know is that teaching has been a mainstay of my life and that it will be the last thing I give up if I have any choice in it.

...Practical, empathic, and deep--now that is a motto for a life.

Old teachers, like the moon, bask in reflected light from the achievements of their students.

Every good thing to you for 2011, and thank you very much for writing me this splendid note.

The field experience is sure to be an important educational opportunity for the 900 first year HBS students. But it will also be an important educational opportunity for the faculty, especially with regard to ethics education. Before he became dean, Professor Nohria proposed a code of ethics for business. But we know from centuries of medical education that codes don't shape behavior. I look forward to hearing from HBS faculty and students about the ways in which the new field experience program does, and does not, influence the values orientation of the planet's future business leaders.

Should the Irish Giant be Buried at Sea?

2011-12-30T10:30:00.004-05:00

On December 20 the British Medical Journal published a fascinating and important article by ethicist Len Doyal and law professor Thomas Muinzer - "Should the skeleton of 'the Irish Giant' be buried at sea?"

Charles Byrne was born in County Londonderry in Ireland in 1761. It was clear from early in his life that he had a growth disorder. He ultimately grew to approximately 7' 7". Charles, who was from a poor peasant family, became relatively wealthy from being exhibited as a freak. In 1780 he went to London where he entertained audiences and was described as "civilised" and "amiable." But his health deteriorated, and he died in 1783.

Charles was terrified that Dr. John Hunter, the famous surgeon, who was known for collecting corpses to dissect, would lay hold of his body after death. He requested that he be placed in a lead coffin and buried at sea. After his death friends set out to do as he wished, but Hunter bribed them, and his body was removed and replaced with stones. Hunter boiled the body to reduce it to a skeleton, which he exhibited in his own museum, which is now part of the Royal College of Surgeons.

The video that accompanies the article provides a brilliant opportunity for moral deliberation. The authors argue persuasively that Charles Byrnes's clearly expressed wishes ("advance directive" in current parlance) should be respected, albeit belatedly, by burial at sea. But Brendan Holland, a man with acromegaly (Byrnes's condition) from the same area of Ireland, whose pituitary tumor was successfully treated, persuasively argues that if Charles Byrne understood how study of his skeleton has benefited others (by identification of a genetic mutation that predisposes to acromegaly) he would want his skeleton to remain in the museum where further therapeutic research could be done as new methodologies emerge.

The BMJ posed a poll along with the article. As of today, with 700 votes having been cast, 54.3% favor burying Byrnes at sea, 13.4% favor keeping the skeleton for further research but not exhibiting it, while 32.3% would leave it on display.

The video pits Doyal and Muinzer's "respect-for-the-individual" argument against Holland's "respect-for-the-good-of-others" position. Holland imagines that Byrne would have been persuaded by his perspective, a move that - if accepted - undermines Doyal and Muinzer's conclusion. But as they point out, his conclusion about what Byrne would have wanted is purely speculative.

This contest between rights of the dead and welfare of the living came up for me in a consultation many years ago. A clinician whose patient had committed suicide had been approached by his patient's family with a request for information. Their underlying question was - "did X love us?" X had given no guidance about his wishes. I asked what my colleague inferred X would have wanted him to do. He felt that while X knew that suicide would hurt his family, he would not have wanted them tortured by the question of whether he loved or hated them. I suggested that my colleague follow his best sense of what X would have wanted.

But suppose X had expressed hatred of his family and a wish that his suicide would punish them? What then?

I don't believe this question can be answered without much more detail about the circumstances. But in my view the analysis should attend to the wellbeing of the living as well as the wishes of the dead. With regard to Charles Byrne that perspective leads me to favor (a) retaining the skeleton for its further potential for research that would help the living, thereby respecting the welfare of the living, but at the same time (b) using Doyal and Muinzer's argument as the basis for prodding moral reflection, thereby respecting the dignity of the dead.

(Disclosure: Len Doyal was very helpful to me when I was a fellow at the King's College Centre of Medical Law and Ethics in 1992. I haven't seen him for more than a decade, but I think of him as a friend.)

Adapting to Chronic Illness

2011-12-28T19:00:00.004-05:00

I'm at a Vermont country inn for a few days of family holiday. Today a freezing drizzle deterred us from cross country skiing or snowshoeing, and I sat by the fireplace with Oliver Sacks's most recent book - The Mind's Eye. The book is a collection of Sacks's distinctive stories about people who have experienced neurological disasters. Sacks uses the stories to probe how the mind functions and how we frail but resilient humans adapt to dramatically altered circumstances such as losing the ability to speak, read, or recognize objects.

Pat, an active, sociable woman, suffered a massive stroke in her sixties that left her paralysed on the right side and unable to speak. Sacks describes how over the course of several years Pat learned to express herself by way of gestures and use of a list of words she could point at to name a topic or make a request:

Every so often, Dana [Pat's daughter] related, her mother would make a gesture that seemed to say, "My God, what happened? What is this? Why am I in this room?" as if the raw horror of her stroke hit her once again. But Pat was aware that she had, in a sense, been very lucky, even though half of her body remained paralysed. She was lucky that her brain damage, though extensive, did not undermine her force of mind or personality...

Pat's story, and others, reminded me how patients of my own had adapted to psychiatric ailments that, in the current state of the art, we couldn't cure. (I've disguised the vignettes.)

John had schizophrenia, but luckily not with any deterioration of underlying intelligence or other mental functions. When his symptoms acted up he channeled voices. To him the experience was real, but he knew that walking down the street conversing with hallucinatory companions struck people as odd. Since he liked to be out and about, he carried a cell phone, to look like others chattering with presumably non-hallucinatory conversational partners.

I was impressed with John's practicality, and passed on his technique to others.

Janet, in her forties, also suffered from schizophrenia. She was tormented by the conviction that she spoke in her sleep, accusing herself of deviant sexual acts. Her husband assured her that she slept soundly and said nothing, but she didn't believe him. She insisted on keeping all the windows closed so that passers by wouldn't hear her self accusations and think badly of her.

Closed windows made the house stuffy in the summer. This made for conflict with her thirteen year old son Alex. He persisted in opening his window and Janet persisted in blowing her top.

We held a family meeting. I said to Alex - "you know your mother has beliefs she can't shake that make her feel the windows have to stay shut." Janet nodded in agreement. "But if you're too hot in your room and sneak your window open, she'll understand and won't get too mad in the future." I was sure that Janet, who loved Alex and who had a sense of realism alongside her delusions, would agree. She did.

It was as if Janet lived on two planes. On one, her delusions were in charge. On the other, she could accept Alex's need to open his window. I was never sure whether that meant that at some level she saw her delusions as "unreal," or if, as a loving mother, she was willing to risk condemnation from her neighbors for the sake of her son.

I'd asked a patient who came from France what a French psychiatrist would say at the end of an appointment to a patient struggling to stay well. First she mentioned "continuez sur le bon chemin" ("continue on the same good path"). Then she cited, as more helpful to her, the single word - "courage." That rang true.

Clinicians who care for people with chronic conditions need to be skilled at rehabilitation as well as their own specialty. We need to respect and support our patients' capacity for courage.

Another of Sacks's patients made the point well: "The problems never went away, but I became cleverer at solving them!"

Getting Patients to Think About Cost

2011-12-22T08:00:00.002-05:00

Harvard Pilgrim Health Care (HPHC), the not-for-profit regional health plan (Massachusetts, New Hampshire and Maine) where I direct the ethics program, is introducing a rewards program - "SaveOn" - to encourage patients to have procedures like colonoscopy, mammogram, and MRI at facilities that provide the service at lower cost. Patients who use lower cost facilities will receive a check for 10$ to $75. Here's how HPHC CEO Eric Schultz explains the rationale:

"It’s the kind of decision patients aren’t making today because they don’t have the information. Doctors are still referring patients for diagnostics based on the way they’ve always done it, without regard for the cost. But we can’t sit around and accept behavior that drives costs up with little or no impact on quality."

I respect and admire Eric Schultz, and think of him as a friend. But here's what Dr. Rick Lopez, chief medical officer for the group I practiced with for 35 years, and who I also respect and admire, and think of as a friend, has to say about SaveOn:

"I do have concerns about this. When I refer a patient for a test or an imaging, I’m taking into account what the patient needs and I’m referring the patient to a place where there’s quality. And I know that from experience. And, [if something goes wrong with a patient’s care] the doctors are liable."

I understand where Rick is coming from. SaveOn is a disruptive innovation. Rick knows and trusts the radiologists who do imaging studies for his patients and the gastroenterologists who do the colonoscopies. Of course he prefers to use them.

If I'm a lower cost radiologist I'm motivated to do a good job with Rick's patients and to communicate with him. If I succeed everyone wins. I build my practice, the patient gets a direct financial reward, and the referring physicians are happy with my services. And if the specialists Rick prefers are losing referrals on the basis of cost, they may decide to lower their fees.

But who benefits from the savings? Here's what Richard C. Lord, president of Associated Industries of Massachusetts, a trade group representing 6,000 businesses, has to say about SaveOn and the savings it may produce:

"Conceptually, it’s a move in the right direction. We’ve been talking about getting consumers more engaged in making their own health care decisions. Up until now, there’s been no incentive to a consumer to shop around. [But] ultimately the savings should be reflected in premiums employers pay."

For the past 25 years I've thought, talked, and written about the ethical imperative to contain health care costs. Unlike health care, words are cheap, and reams of articles and exhortations have not slowed down the cost curve. Innovations like SaveOn have the potential to be more educative than learned articles. If I see that the MRI I'm referred for may cost $1,000 at facility A and $3,000 at facility B, I'll be prodded to think about value. Perhaps B offers $2,000 worth of additional value, but perhaps not. The crucial thing is for the U.S. population to see questioning health care costs as an ethically appropriate activity, not a moral crime!

(The quotations come from a Boston Globe article. To learn more about how the SaveOn program works, see the website of Tandem Care, the subcontractor who provides the service.)

Why Patients Should Have Easy Access to their full Medical Records

2011-12-20T19:00:00.000-05:00

Two articles in today's issue of the Annals of Internal Medicine present research on patient attitudes towards access to their doctor's notes: do they want to read the notes? do they think reading notes could be harmful? and, would they share the material with others? The articles and the accompanying editorial put some flesh onto the often vacuous buzzword "patient-centered care."

One article discusses OpenNotes, a year-long test of giving patients ready access to their primary care physicians' notes at sites in Boston, rural Pennsylvania and Seattle. The other describes a VA survey of patients who use My HealtheVet, the VA personal health record system.

Virtually all respondents believe that having access to their doctors' notes would help them. A minority (fewer than 1 in 6) was concerned that the notes would confuse them or cause worry. In the VA survey, 4 of 5 would want to share aspects of their record with family caregivers and other physicians.

The editorial described of how the M.D. Anderson Cancer Center has given patients and their referring physicians access to the Anderson electronic medical record. Since May 2009 more than 40,000 patients have viewed their records over 605,000 times, and 1,300 referring physicians have accessed the records of their patients over 28,000 times. 84% of Anderson's active patients have obtained access to their records. The editorial concludes:

Any health care organization with an electronic medical record and a secure Internet portal can provide patients and referring physicians with real-time access to medical records from anywhere in the world, opening the door to levels of patient engagement and care coordination not previously possible.

I believe that ready access to our own medical records is an important piece of what patient-centered care will mean in the future. The group I practiced with for thirty five years was using an electronic record when I joined. By the good fortune of having been forced to learn touch typing in middle school, I kept the keyboard on my lap and could look at my patient while making notes. I often consulted them about what we should put into the record. In the future I hope that in addition to having real time access to their records there will be ways for patients to make entries of their own. That's collaborative care!

The OpenNotes team compares the innovation they are testing to a new drug. OpenNotes is approaching a potential policy change in an admirably empirical manner. There's lots of reason to be optimistic about the benefits the intervention will offer, but my optimism is a hypothesis, not an established truth.

A Personal Experience with Consumer Directed Health Care

2011-12-19T20:00:00.003-05:00

I'm agnostic about how effective Consumer Directed Health Care (CDHC) will turn out to be in prodding us patients to acting like discerning, value-oriented consumers. But I'm a total believer in the goal.

As a psychiatrist whose work is now largely in ethics and health policy, I'm interested in the psychological side of how we not-always-rational human beings respond to policy innovations like CDHC. So when I had a little interaction with my own CDHC plan last week, I paid attention.

In the last couple of weeks a longstanding mild medical problem had acted up such that my primary care physician and I decided that a specialty consultation would be a good idea. As a physician I knew it wasn't a medical emergency, though it had preoccupied me enough so that I didn't do any blog posts between December 1 and December 18.

In terms of CDHC, I knew that I'd met my deductible for 2011, so the sure-to-be-pricey specialty consultation would only cost me a $20 copayment, not an arm and a leg, but only if it took place this year. But I doubted that a "routine" appointment would be available before January at best, when the new deductible would kick in.

I was pretty sure I could get an appointment in 2011 if I said it was "urgent." But from a medical perspective it wasn't urgent, and I didn't want to (a) lie or (b) take away an appointment from someone else for whom it would be truly urgent. But at the same time I was peeved at the idea that the consultation would cost me $20 or several hundred dollars (especially if tests were added on, which they may well be), depending on the vicissitudes of schedule. Since I could afford the difference, even if grudgingly, I determined to take the first non-urgent appointment that was available, expecting it to be in 2012.

Still, it seemed odd that "better service" (an appointment in December) would cost much less than "worse service" (an appointment in January or later). That would be like Amazon offering next day delivery for a lower price than routine delivery!

The personal side of the story has a happy ending - the specialist had time later this week.

But I was interested in the way the financial incentive built into CDHC created a potential artifact. It wasn't a big deal, but these real world behavioral impacts are the kind of thing we need to understand and evaluate in assessing policy innovations.

(For an example of research I did with colleagues on the behavioral impact of CDHC see here. And see here for a blog post about how CDHC can work exactly as hoped for!)

The Reform Medicare Really Needs

2011-12-18T08:00:00.002-05:00

Between now and the elections in November 2012 we're going to hear a lot about Medicare vouchers - or, in the prettied up term, "premium support." We're finally at the point where no responsible politician denies the need to curtail Medicare costs. And, in recent weeks, Democrats as well as Republicans have been floating different forms of voucher proposals for reining in Medicare costs. "Guaranteed Choices to Strengthen Medicare and Health Security for All," the hot-off-the-press proposal from Senator Ron Wyden (D-Oregon) and Representative Paul Ryan (R-Wisconsin) will get the most attention.

The Wyden-Ryan proposal opens with an on-target diagnosis of how virulent Medicare politics has led to the morass we're in:

Few issues draw more heated partisan rhetoric than the future of Medicare. Seniors are a reliable and powerful voting bloc, and both Republicans and Democrats are guilty of exploiting Medicare concerns to frighten and entice voters..In fact, the more the national conversation about the future of Medicare deteriorates into partisan attacks that our opponents will “cut Medicare” versus superficial campaign pledges to “make no changes” to a 45-year-old program, the harder it gets to have a serious debate about the best way to ensure that seniors can rely on a strengthened Medicare program for decades to come.

The debate about Wyden-Ryan and other voucher proposals is predictable. Republicans and a few Blue Dog Democrats (foreign readers - "Blue Dogs" are conservative Democrats) will fight for vouchers on the basis of free market theology of choice and competition. Yellow Dog Democrats (foreign readers - "Yellow Dogs" are so loyal they would vote for a yellow dog if it was called a Democrat) will fight to keep fee-for-service Medicare as it is, with tweaks to reduce costs.

Both positions are wrong. They ignore the two most important constituents - Medicare beneficiaries themselves and the improvement-minded clinicians who care for them.

We Medicare beneficiaries (I say "we" even though I'm only a Medicare "eligible," since I still have employer insurance) don't want to mortgage opportunity for future generations to pay for the bloated system we have now. The 77% of us with traditional Medicare like the government-run insurance program. The 23% of us with Medicare Advantage plans are happy with private insurance. But we're not happy with the discoordinated care system in which tests are repeated unnecessarily, doctors don't communicate with each other, we get readmitted to the hospital too quickly, and, at the end of life, too often die surrounded by monitors and tubes in the ICU rather than by our loved ones at home. And our physicians and nurses are frustrated by many of the same things.

To get real Medicare reform three things must happen:

Medicare beneficiaries must speak out about improving care and protecting future generations by reducing costs. Politicians imagine that we're all "greedy geezers" like the folks who threaten them in the recent AARP advertisement. Some of us are, but it's a minority. Our political leaders won't get serious until they hear from us - their constituents - about what most of us believe and want.

Improvement-minded physicians, nurses, other health professionals, and administrators are the ones who know how to wring the waste, estimated to be as high as 30%, out of the care system. Competition won't do it. Vouchers won't do it. Only motivated health professionals can. If you want to understand why this is so, read Don Berwick's recent address to the Institute of Health Improvement.

Medicare needs a budget. Creating a budget by adding up the bills for our care won't do the job. If there's a true budget we can work with out caretakers to do what's needed within fair limits. Most of us are on fixed incomes. We know there's no pie in the sky!

For 35 years I practiced and got my own care at a not for profit HMO where clinicians and patients lived within a budget and made the system work. I'd rather see us use patient-physician collaboration as the basis for Medicare reform rather than hope that financial pressure will turn Medicare beneficiaries into health care shoppers who drive costs down. But quite apart from the prevailing conservative faith-based belief that "skin in the game" will inevitably fuel the needed reforms, it's not irrational to fear that politicians won't have the gumption to create and stick to a true budget for Medicare, or to allow CMS to apply sensible management strategies like centers of excellence instead of unbridled fee-for-service. It's that perspective that leads Democrats like Senator Wyden to take up the voucher concept.

But with or without vouchers, with or without either single payer Medicare or multiple competing insurers, the key ingredients of Medicare reform are (1) strong beneficiary demand for positive change, (2) leadership from improvement-minded clinical leaders, and (3) an overall budget for the program. Without this triad we're just whistling into the wind.

Ethics of Physician Self-Disclosure

2011-12-01T14:00:00.004-05:00

Shara Yurkiewicz, an enterprising second year student at Harvard Medical School, edited the December issue of the American Medical Association Journal of Ethics, an on-line publication targeted to medical students, residents and fellows. Shara developed a short case that raised questions about physician self-disclosure and asked me to comment on it. It's a fascinating part of clinical practice. You can read the piece here if you're interested.

Shara writes a great blog about her experiences at medical school. You can see it here.

P.S. I didn't choose the title ("Is Physician Self-Disclosure Ever Appropriate?"). It would seem nonsensical to argue that self-disclosure is never appropriate. The important questions are - when is it appropriate and how should we decide?

A Controversial Proposal about Complementary Medicine

2011-11-28T08:30:00.001-05:00

A controversial proposal about complementary and alternative medicine (CAM) will be the hot item today and tomorrow at the annual meeting of the College of Physicians and Surgeons of Ontario. Since the College regulates medical practice in Ontario, this isn't a Mickey Mouse discussion!

The College felt it had to create a policy because patients in Canada, like those in the U.S., were voting with their feet - and money - for CAM:

In increasing numbers, patients are looking to complementary medicine for answers to complex medical problems, strategies for improved wellness, or relief from acute medical symptoms. Patients may seek advice or treatment from Ontario physicians, or from other health care providers.

The proposed policy explicitly recognizes a patient's right to decide on the course they want to follow:

Patients are entitled to make treatment decisions and to set health care goals that accord with their own wishes, values and beliefs. This includes decisions to pursue or to refuse treatment, whether the treatment is conventional, or is CAM.

In my psychiatric practice, I heard more than once from patients that their other physicians pooh-poohed psychiatric treatment, especially psychotherapy, with terms like "magic," "witch doctor" and "rent-a-friend." From that experience, I especially liked the way the Ontario College insists that physicians conduct themselves with civility:

The College expects physicians to respect patients' treatment goals and medical decisions, even those with which physicians may disagree. In discussing these matters with patients, physicians should always state their best professional opinion about the goal or decision, but must refrain from expressing personal, non-clinical judgements or comments...about the therapeutic options, or the patient's health care goals or preferences unless those are explicitly requested by the patient.

The fact that many physicians and physician organizations complained bitterly that this standard would "muzzle" them demonstrates the need for making civility and common courtesy an ethical expectation!

The Canadian medical community was especially vehement in its criticism of the way the original draft discussed standards of evidence for CAM. In the eyes of the critics, the College was setting a lower bar of evidence for CAM compared to allopathic medicine. Here's the key passage from the original draft:

Reasonable expectations of efficacy must be supported by sound evidence. The type of evidence required will depend on the nature of the therapeutic option in question, including, the risks posed to patients, and the cost of the therapy. Those options that pose greater risks than a comparable allopathic treatment or that will impose a financial burden, based on the patient’s socio-economic status, must be supported by evidence obtained through a randomized clinical trial that has been peer-reviewed.

To my reading, this statement was entirely reasonable. It's a small percentage of medical practice that's based on rigorous randomized controlled trials. The term "sound evidence" requires explication, but it's the best we can claim for much of what we physicians do. The wording of the revised proposal being discussed in Toronto today makes it clear that the same standard of evidence should be applied to "conventional" and "complementary" medicine. But to my reading it retains an appropriately skeptical view of just how solid the evidence is for what is conventionally done:

Any CAM therapeutic option that is recommended by physicians must be informed by evidence and science, and it must:

• Have a logical connection to the diagnosis reached;
• Have a reasonable expectation of remedying or alleviating the patient's health
condition or symptoms; and
• Possess a favourable risk/benefit ratio based on: the merits of the option, the potential interactions with other treatments the patient is receiving, the conventional therapeutic options available and other considerations the physician deems relevant.

Physicians must never recommend therapeutic options that have been proven to be ineffective through scientific study.

I applied these standards to myself with regard to my treatment many years ago of a patient with trichotillomania (compulsive hair pulling). The literature recommended medication and stated that hypnosis did not work. But my patient didn't want to take medication, and liked the concept of hypnosis, despite what the literature said. We agreed that it seemed relatively risk free, and tried it.

It worked. I didn't see the patient again until 20 years later, when the symptoms recurred. A brief repeat of the hypnosis did the job again. (For a more extensive discussion of the case, see here.) I believe the Ontario College would conclude that the treatment met their standards. I had done the hypnosis, but I hadn't recommended it!

If I were in Toronto today I'd vote to approve the College's proposal. Without demeaning "conventional" medicine it implicitly recognizes the degree to which conventional practice rests on uncertainties. And without using the term "placebo effect" it allows for the provision of interventions - "conventional" and "complementary" - that may well derive their efficacy from the placebo mechanism.

(The proposal being considered by the Ontario College of Physicians and Surgeons can be found on pages 248-275 of the agenda for today's meeting. If you're especially interested in the topic, you can read the original policy statement draft here. A summary of the Canadian Medical Association's criticism of the original draft is here.)

Learning from Massachusetts Health Reform

2011-11-22T20:30:00.008-05:00

The Blue Cross Blue Shield Foundation of Massachusetts has just published a report on the first five years of Massachusetts health reform. The report provides valuable lessons about how U.S. society can learn to improve access and set limits on costs. It's crucial for us to understanding the learning curve for health reform. Reforming the health system isn't primarily an intellectual challenge. The difficulties are mainly in our own psyches, and among the different players on the health care chess board.

As I see it, the key aspect of Massachusetts health reform is the process by which it came about. 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. The term "Obamacare" is a symptom of the lack of dialogue and civility.

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.

Massachusetts has reduced its uninsured population to 1.9%, compared to the shameful national average of 16.3%. The cost of the subsidized insurance has gone up 3% per year, significantly lower than the national average. Approval of the 2006 law has remained steady at two thirds of the adult population.

Massachusetts explicitly chose to tackle coverage before squaring off with cost. The five year report documents that coverage is relatively "solved." Now the state is turning its attention to cost.

It looks to me as if we're approaching the cost problem the way we approached coverage - with LOTS of talk. We've had multiple reports, all of which say much the same thing - that providers with market clout get paid high prices without delivering comparably superior outcomes, that the entire system has a great deal of waste, and that cost escalation is strangling the businesses, public agencies, and individuals, who pay for care. As I wrote back in March, Massachusetts is the jawboning capital of the western world (see here).

Wise psychotherapists understand that dealing with the resistance to change is the hard part of the work. Once resistances have been dealt with, things get easier. And the late management guru Tony Athos described Japanese management style in the same way - LOTS of process to bring about consensus and then much smoother implementation than we see with our "process-lite" U.S. approach.

I believe, and hope, that what we're seeing in Massachusetts now with with regard to health care costs is creating the human and social infrastructure we need to get a grip on costs. The next report, five years from now, will reveal whether this is true or not.

(The five year report, written by my former colleague Alan Raymond, is very readable. If you're interested in learning more about Massachusetts health reform, take a look.)

Zeke Emanuel on Health Reform

2011-11-20T10:00:00.002-05:00

Zeke Emanuel provides an excellent piece of public education about the potential for improved quality of care and cost savings in a recent New York Times blog post. The piece will be especially informative for folks who don't understand how fragmented the U.S. care system has become and how fee-for-service reimbursement promotes the fragmentation. Emanuel concludes, correctly, that there's substantial potential for improving care for patients with chronic illness, and that these improvements can achieve savings for the health system.

But I think Emanuel makes two mistakes in the piece. Both come from misinterpreting the psychological underpinnings of health reform.

First, after describing very lucidly how bundled payments provide financial support for coordination among caretakers, he explains that "the idea is to force all of a patient's care providers to work together." But "force" is the wrong verb here, and it reflects a mistake medical managers make all too often.

Collaborating with colleagues actually makes practice more enjoyable as well as more effective. Working together in ways that help our patients is intrinsically satisfying. When those in charge assume we clinicians have to be "forced" to do something, we buck them. When they facilitate what good clinicians want to do, we do it with pleasure. The idea of global payments is to "allow" and "support" collaboration, not to "force" it!

Second, Emanuel correctly notes that improved care coordination can produce much more savings than malpractice reform. But apart from the question of how much savings a reduction in defensive medicine might produce, the climate of litigation has a corrosive impact on the psychology of medical care and the doctor-patient relationship. In ethics discussions with medical students, residents, and practicing physicians, the first question is typically - "what does the law say - what happens if I'm sued?"

The spectre of malpractice litigation creates a sense that patients and society are potential enemies. Health reform requires collaboration between doctors, patients, and the wider public. Malpractice reform is crucial not just for whatever money it might save for the health system, but for the potential that reform will reduce the degree to which physicians feel under attack.

Public Altruism about Health Care is Alive and Well

2011-11-16T07:30:00.001-05:00

Four days ago I discussed Medicare beneficiaries who think about Medicare in terms of future generations and the common good, not just in terms of their own care. That post was triggered by my reaction to hearing this aphorism:

The true meaning of life is to plant trees under whose shade you do not expect to sit.

This morning's Boston Globe included an obituary that made the same point. It told about Paul White, who died at 61 of kidney cancer, after eight years of illness. Here's the relevant passage:

In a life curtailed by cancer there was much to curse, but Mr. White was more apt to speak optimistically about how chemotherapy gave him more time with his five granddaughters and how experimental treatments would provide a foundation for patients he would never meet.

"He just felt he was doing his part," his daughter said. "He kept talking about, 'I'm doing this for the next generation.' I can hear him saying that: 'I'm the guinea pig for the next generation.'"

I've been looking to see if any surveys of Medicare beneficiaries suggest what proportion is moved by concerns about the commons. I haven't yet found what I'm looking for, but I'd predict that it's a substantial number.

The Globe also included this letter to the editor:

Five ways to cut spending on Medicare - from a beneficiary

WHEN SPENDING less on Medicare is suggested, it seems that many people, especially Democrats and those over 65, protest loudly. However, there are ways that Medicare could spend significantly less money without denying anyone medical care that is of value. As a Medicare beneficiary myself, I offer five concrete proposals.

1) Make generic drugs the default for covered prescriptions.

2) Let Medicare negotiate with drug companies on the cost of drugs.

3) Let the Medicare Independent Payment Advisory Board identify medical services that provide little or no benefit, and let Medicare refuse to pay for them, or require significant copayments.

4) For surgery or other major interventions for which there are medically reasonable alternatives, do not pay for those interventions unless patients are fully informed about their alternatives, including no intervention at all.

5) Give providers significant protection from malpractice claims if they can document that patients were well informed before a treatment decision was made.

Congress has made if difficult or impossible for Medicare leadership to take any of these reasonable steps to control Medicare costs. Enacting these reforms could significantly cut Medicare costs with no downside for patients or their doctors.

Jack Fowler

Brookline

The writer is senior scientific adviser for the Foundation for Informed Medical Decision Making. His views here are his own.

Voices like Paul White and Jack Fowler can make an important contribution to our national political dialogue. There's no way to deal with the country's long-term economic health without dealing with Medicare. If enough Americans speak as Paul White and Jack Fowler did it will become harder to argue for the politics of selfishness that our anti-tax zealots are so eager to promote.

Mitt Romney on the Veterans Health System

2011-11-14T08:00:00.000-05:00

By temperament I'm an optimist, but Republican pronouncements on health care, like Mitt Romney's proposal for privatizing the Veterans Health system, challenge that stance. Paul Krugman has a powerful op ed on this latest piece of Republican disinformation in today's New York Times.

The Veterans' care system was radically reengineered in the 1990s. It now consistently outperforms the private sector on measures of quality and cost. As Krugman points out, that violates Republican theology. When facts and faith collide, something has to give. Romney isn't dumb, so the differential diagnosis is (1) faith in markets that is so strong he'll deny facts or (2) garden variety political duplicity - (i.e., expeditious lying).

(See this piece in yesterday's Daily Kos for details about the VA program and the Republican knee-jerk assault on public programs.)

Do Medicare Beneficiaries Only Think About Themselves?

2011-11-12T09:00:00.004-05:00

This week I spoke with a friend about my conviction that U.S. political process needs a voice from Medicare beneficiaries advocating for a progressive and sustainable approach to Medicare. I told him that although I don't have survey data to draw on, I believe that many of us folks in the Medicare generation are worried about the impact of runaway Medicare costs on future generations. We're not all like the belligerent elders in the AARP advertisement who warn politicians - if you want my vote, don't touch my Medicare.

My friend responded with an aphorism I'd never heard before:

The true meaning of life is to plant trees under whose shade you do not expect to sit.

I do a lot of walking in the woods and love trees, so the aphorism moved me.

I went back to Erik Erickson, to review his interpretation of the stages of life. I discovered that I misremembered his schema. I mistakenly thought Erickson named the healthy approach to aging "generativity." Erickson actually posits that as the virtue for adulthood. "Wisdom" is what he ascribes to the successful 65+ folks. It's opposite is despair.

Erickson may have been on target when he formulated his views 50 years ago, but I think he's wrong for the present. "Wisdom" as he conceptualizes it involves reflecting on the meaning of one's life. That sounds passive and somewhat narcissistic. What I see, and experience, in the Medicare set, is much better described as a quest for "generativity." The question many pose for themselves is - what can I contribute to the world at this phase of life?

Current political dialogue offers two choices for Medicare policy - "don't touch Medicare" or "tinker with the mechanics - raise the age of eligibility or replace Medicare with a voucher to buy insurance."

No one is talking about a cooperative enterprise in which Medicare moves to sustainability via patients and clinicians cooperating to create a more caring, less technological, approach within an overall budget that doesn't saddle the next generations with crushing debt.

There's more than enough money in our current expenditure to provide excellent care for beneficiaries. The way I make the point to knowledgeable friends is to ask - imagine what Medicare would be like if it was guided by the best clinicians from a population-oriented program like Kaiser Permanente!

(The aphorism comes from the title of a book Wes Henderson (1928-2003), a third generation Canadian, wrote about his father Nelson. It's the advice Nelson gave Wes when Wes graduated from high school.)

Sister Margaret McBride Speaks Out

2011-11-07T07:30:00.001-05:00

Fundamentalist certainty is an understandable, but dangerous, stance in a world that William James famously described as a "one great blooming, buzzing confusion." Believing that our "truths" are true for all, and that disagreement is iniquity, is simpler than dealing with the diverse views of seven billion fellow humans.

Last year Sister Margaret McBride was excommunicated for her role at St. Joseph's Hospital in Phoenix in allowing an abortion to be done to save a pregnant woman's life. In her first public comments since Bishop Olmsted pronounced her excommunication, she told the Arizona Republic (by email):

"My journey over the past year has led me in many directions, but ultimately to a new understanding of forgiveness and mercy...Whether we are talking about my situation, the state of the church or society in general, I believe that forgiveness and mercy are extremely important for each of us...

Our important mission to our community has not changed. This is an extraordinary place with people from every religious background doing the impossible every day. At the heart of St. Joseph's is still our commitment to caring for the poor and ill in our community. Each employee is an inspiration to me every day in carrying out the mission of the Sisters of Mercy," (McBride's religious order, which is active in education, health care and social service worldwide).

According to the article, "sources" report that Sister Margaret has "resolved" her excommunication by going to confession.

Here's my guess about what "resolved" means.

When I did my psychiatry training in Boston, we learned which priests were likely to absolve depressed patients for "sins" like masturbation and which were likely to reinforce what we saw as pathological guilt.

I hope that Sister Margaret has been absolved and recognized as a good Catholic by a wise priest!

(For previous posts on St. Joseph's Hospital and Sister Margaret McBride, see here, here, here, here, and here.)

Union Health Plans and Health System Ethics

2011-11-04T18:30:00.009-04:00

On November 1 I blogged about how much I looked forward to meeting the next day with union leaders responsible for overseeing union health plans.

As I'd anticipated, the union leaders evinced a strong sense of solidarity with the insured population and, at the same time, a strong sense of the economic realities of the insurance fund. I presented a diagram I've often used to convey my view of the ethical framework that - ideally - patients, clinicians, purchasers and other stakeholders would use in their dealings with the health system:The idea that we should approach the health system committed to both fidelity to the needs of the individual and stewardship of the resources available for the care of the group was intuitively obvious to the group, as did the metaphor of numerator and denominator that I also like to use::Bringing about a health "system" that is more effective, equitable and efficient in a nation of more than 300 million and a bitterly divided national political process requires won't happen without multiple local initiatives. Oregon, Massachusetts and Vermont show what individual states can do.

The union leaders taught me that union health plans can make important contributions to the national learning curve. Unions are about solidarity on behalf of shared interests. As a population we should be solidly unified on behalf of achieving the best health we're capable of. Sadly, we're not. Union health plans provide a venue in which substantial components of our population are committed to the well-being of each person and, at the same time, to being realistic about how much resource can be devoted to health care. What they learn and demonstrate can help us all.