Either/or Thinking about Opiate Addiction

An article about "Rehab Rooted in Science" in this morning's New York Times provokes me to rant about one of my pet peeves - either/or thinking about complex medical problems and grouping those who disagree into opposing "camps."

The story describes how Dr, Mark Willenbring, a psychiatrist specializing in addiction treatment, became frustrated at the limited uptake of medication-assisted treatment of opiate addiction, which, according a review of evidence in last year's Harvard Review of Psychiatry, doubles the likelihood of obtaining abstinence.  Dr. Willenbring started his own treatment center, at which he makes extensive use of medications that reduce cravings and help many patients achieve stable abstinence.

The NYT article quotes a counselor who favors abstinence - treatment without medications - as follows:

"Substituting one drug for another is an external solution for an internal problem. [Dr. Willenbring’s approach]  deprives his patients of the opportunity to have a full range of emotional experiences, a change of spiritual perspective and a return to an improved quality of life."

Unless there's rigorous evidence for this view - and there isn't - it's an irresponsible symptom of either/or thinking. It should be a no-brainer that treatment for opiate addiction should combine medications, psychotherapy, 12 step programs like NA and AA, and more, in whatever combination seems best for a particular patient.

When I first entered psychiatric practice I was puzzled when people asked me what "camp" I followed. Was I a Freudian? A Jungian? A medication-oriented psychiatrist? Just what was I?

Sometimes I tried to explain why I thought the question itself was misguided. Sometimes I was provocative - I remember saying things like "if standing on my head and spitting wooden nickels helped my patients get better, that's what I'd do." But if I felt that the person I was talking with needed to put me in a "camp," I said I was a follower of Dr. Adolph Meyer, a distinguished early 20th century psychiatrist who embodied balanced thinking, and whose articles were published as The Commonsense Psychiatry of Dr. Adolph Meyer.

I assume that our earliest ancestors developed "us versus them" thinking as a way or consolidating their tribe. We still see all-too-much tribal thinking all across the globe. Medicine should set an example of thoughtful gathering of evidence, respectful discussion of alternatives, and steady improvement in what we have to offer. Either/or thinking and clumping ourselves into warring camps may give us a "high," but should not be part of our efforts to deal with as difficult a problem as opiate addiction!

Viagra and the Political Genius of Mary Lou Marzian

Most readers have probably heard about a bill Kentucky State Representative Mary Lou Marzian proposed in response to Kentucky's most recent intrusion on a woman's right to choose:

A health care practitioner shall:
(1) Require a man to have two (2) office visits on two (2) different calendar days before the health care practitioner prescribes a drug for erectile dysfunction to him;
(2) Prescribe a drug for erectile dysfunction only to a man who is currently married;
(3) Require a man to produce a signed and dated letter from the man's current spouse providing consent for a prescription for erectile dysfunction; and
(4) Require a man to make a sworn statement with his hand on a Bible that he will only use a prescription for a drug for erectile dysfunction when having sexual relations with his current spouse.

Representative Marzian, a retired nurse, wanted to expose the hypocrisy behind Kentucky's new law requiring a women to receive "counseling" 24 hours before having a legal abortion, in hope that Kentucky women would join her in saying "enough is enough." Not surprisingly, her proposal has gone viral. It's an act of political genius. Rather than offering another rant, she takes the precedent of legislative intrusion into medical care to its logical extreme - but focused on men.

In addition to being hilariously funny, her bill represents a philosophical argument Socrates would have been proud of. His distinctive technique was to take an inadequately thought through position and show how it leads to conclusions his interlocutor cannot accept. If a picture is worth 1,000 words, a spoof like the bill Representative Marzian proposed is worth 10,000 or 100,000.

Hats off to a Kentucky legislator with the guts, wisdom, and delicious sense of humor to come up with the proposal she made!

(See here for an op ed by Representative Marzian in the Kentucky Courier Journal.)

"Guilty mind" and the jailing of Professor Anna Stubblefield

I've had several conversations about the justice or lack thereof in the sentencing of Professor Anna Stubblefield since I posted about her four days ago. One person made a strong case against any jail time on the basis that (a) although every reputable professional society that has examined "facilitated communication" has concluded that it is bogus, it's not illegal to use the "technique," and, most importantly, (b) Anna Stubblefield did not have what in legal terms is called "guilty mind" (mens rea).

If I erroneously take your suitcase from the airline carousel because it looks exactly like mine, I'm not guilty of theft. But if when I get home I decide to keep it because I like the content of yours better than mine, I've become a thief. The difference is in my knowingly and intentionally appropriating your property. That's guilty mind.

My critic was right. In initiating a sexual relationship with D.J., a disabled man, Professor Stubblefield (a) believed he had given enthusiastic consent via "facilitated communication," that she was (b) fulfilling his wishes (as well as hers), and that (c) bringing a disabled, previously uncommunicative 32 year old into the shared human world was an ethically admirable act. That doesn't look like a guilty mind. How could jailing her for rape possibly be ethically allowable?

That argument troubles me too. But here's my response. "Facilitated communication" (placing the uncommunicative person's hand on the facilitator's hand to guide writing at the keyboard) has been decisively and definitively shown to be a false theory. The writing comes from the "facilitator," not from what believers in the false theory call the "communication partner."

But given the widely known results of scientific evaluation of "facilitated communication," and the multiple condemnations of it by reputable professional societies, Professor Stubblefield should have known that D.J. could not give valid consent. She should not have accepted her experience at the keyboard as evidence for consent.

Another interlocutor invoked the history of science. Haven't there been examples of theories widely regarded as false that were later determined to be true?

Yes, there have.

Professor Stubblefield and her co-believers in "facilitated communication" are entitled to believe that mainstream science is wrong, and to make ethically allowable efforts to disprove the scientific consensus. But they're not entitled to invade the rights of others, as by "determining" that consent for sexual relations has been given. Similarly, the occupiers of the federal wildlife refuge in Oregon are entitled to argue that the federal government is acting wrongly, but they are and should be liable for trespass for acting on their beliefs.

Still, from the perspective of ethics, sentencing Professor Stubblefield to 12 years in prison makes no sense. She's not a danger to others as long as she neither commits nor incites actions like hers with D.J. That would be a condition of probation. She did not have a guilty mind. Although her case is not a slam dunk, I hold to my view that given 25 years of well publicized scientific findings,  she was not entitled to act on her beliefs.

In my view, the jury was correct in defining her actions as rape. But guilt is one thing and sentencing another. The sentence may be consistent with state law, but the 12 year sentence does not fit the crime.

Sharing our Experience of Illness

In the last couple of month I've developed a problem involving circulation to my toes and foot. The formal name is "acrocyanosis." Colloquially it's called "blue [or purple] toe syndrome." Though the medical literature describes it as painless, what I have hurts. It's commonest in younger people and uncommon in someone my age.

I'm a strong believer in the potential value in learning from others who have a similar condition, but Google didn't produce much, and the diagnosis was not listed on the excellent Patients like Me website. I respect the physicians I've been dealing with, but I was hoping for practical tips about coping from people who have experienced the condition themselves.

While I was musing about the topic of peer networks, my friend and former colleague Al Martin published a post exemplifying what I had in mind in his always engaging Age with Spirit blog. I don't have the condition Al is writing about (Parkinson's Disease), but if I did his post would be a treasure.

Years ago a patient of mine who was about the age I am now developed post herpetic neuralgia, a painful condition that can follow shingles. The pain added to the depression I was treating her for. Like Al, she was an activist, and she wrote about her experience on the web. A young woman from the UK contacted her. My patient, a wise and generous person, "coached" the younger woman on coping with chronic pain. I assume the coaching was helpful to the woman in the UK, but I know it was helpful to my patient.

The famous "twelfth step" in AA is perhaps the best known expression of the idea of peer support: "Having had a spiritual awakening as a result of these steps, we tried to carry this message to alcoholics..." Here's what AA says about the twelfth step:

Here we turn outward to our fellow alcoholics who are still in distress. Here we experience the kind of giving that asks no rewards. ..When the twelfth step is seen in its full implication, it is really talking about the kind of love that has no price tag on it.

My patient with post herpetic neuralgia felt a kind of love for the young person in the UK. If I had Parkinson's Disease, I would feel a spirit of solidarity and love coming to me through Al Martin's post:

This posting is a personal look at my experiences with a chronic brain disease -- Parkinson’s Disease (PD) -- in contrast to the way that the experience looks to others. We view problems that affect the brain with particular dread, because we see the brain as the determinative of who we are as people. Diseases may seem fearful or tragic to those who don’t have them, but the experience may be quite different for the person with the problem. Friends often aren’t comfortable asking about the details, and the person with the problem may not feel comfortable volunteering them spontaneously. As a result, an important part of someone’s interactions can be governed by assumptions. In the following paragraphs are some of my experiences with PD. This posting is a personal look at my experiences with a chronic brain disease - Parkinson’s Disease (PD) -- in contrast to the way that the experience looks to others. We view problems that affect the brain with particular dread, because we see the brain as the determinative of who we are as people. Diseases may seem fearful or tragic to those who don’t have them, but the experience may be quite different for the person with the problem. Friends often aren’t comfortable asking about the details, and the person with the problem may not feel comfortable volunteering them spontaneously. As a result, an important part of someone’s interactions can be governed by assumptions. In the following paragraphs are some of my experiences with PD.My story begins in 2008-09.

For some time, I had noticed a deterioration of my handwriting, which I attributed to the kind of tremor and unsteadiness that lots of older people get when they try to do fine work   I also noticed trouble buttoning my buttons. In fact, I asked a friend of mine, a neurosurgeon, if he noticed any similar difficulty with aging. He laughed that his terrible handwriting had gotten worse, and passed it off as normal aging. In the latter part of 2008, I began to notice chronic fatigue and over the next few months, the fatigue worsened, and I began to lose weight. My immediate concern was some hidden form of cancer, and in early 2009, I saw my internist, who, although he didn’t say it, had the same concern. He began ordering tests, at first a panel of blood tests and a chest x-ray, and eventually a CT scan of the abdomen. All of them were normal, and we were stumped.

On a chance, I mentioned the trouble that I had over two years, deteriorating handwriting and poorer coordination of my right hand.   He referred me to a neurologist, who within 10 minutes told me that I had PD. Among other things, he could see the stiffness in my movements and noticed that I didn’t swing my arms when I walked. He referred me to a Parkinson’s specialist, who confirmed the diagnosis and started me on one of the milder drugs for the disease.   It helped. My symptoms were very mild at the time. No one else noticed them. I could do virtually everything that I used to do, and my fatigue lessened. I was surprisingly incurious about the disease. I had, of course, learned a little about PD in medical school, the rhythmic tremor (which I didn’t have), the stiffness, rigidity, lack of facial expression, and the tiny shuffling steps. I didn’t want to know any more. As long as I was functioning well, I wasn’t interested in knowing more details about where this train was going.

Although tremor is the best-known symptom of PD, its hallmark is what is called bradykinesia, a slowing of movement and stiffness of muscles that eventually can result in immobility. PD is due to death of nerve cells that produce the neurotransmitter Dopamine, particularly in a midbrain collection of deeply pigmented neurons called the Substantia Nigra (black substance). This lack of Dopamine results in the typical symptoms of PD, tremor, bradykinesia, rigidity and difficulty with balance. As PD has become better understood, it is clear that the disease causes much broader symptoms including difficulty with speech, voice, swallowing, constipation, weakness, double vision and in some dementia. It is a disease that is readily treated with medication early on, but which progresses despite treatment with medication eventually becoming less effective.

My reaction to being told I have PD was very consistent with the well-known process of grieving any loss. The first stage for me was denial. I was told that I had PD. I knew what it was supposed to do, but I felt almost no emotion. The long-term consequences were abstract to me. My symptoms were mild; I could do almost anything that I used to do, and it wasn’t visible to others. I didn’t speak about it to friends. The few times that I did, the friend would look like I just said I had untreatable cancer and say something like, “Oh my god; I’m so sorry,” which I wasn’t ready for at that point. At times, I questioned whether I needed the Dopamine medication or even whether the diagnosis was correct. Maybe I would be the one where it didn’t progress or would spontaneously go away. When I saw someone with severe PD, I might be briefly shaken, but then put it out of my mind.

After 3-4 years, it became evident that the disease was slowly progressing, and the diagnosis was undeniable. I threw myself into an exercise program in the hope that through muscle strength, it could be overcome. I read that exercise, particularly that which involves movement, like biking, swimming, walking or tai chi, is important because it does help loosen the muscles, but I couldn’t exercise my way out of the disease. What started as a little stiffness, at times has become the sensation that my muscles are in glue and that any sustained physical effort is very hard. My voice has become soft; I tend to walk with a stoop and my face transmits less expression unless I pay attention to it. When I get up from a chair, I have to take several shuffling steps to get my balance and my legs moving. With PD, one’s muscles don’t automatically cooperate as they used to. It is said that you are damned to a conscious life, because you need to concentrate on everything you are doing and how to do it.

I am aware of what advanced PD looks like to others. Moving slowly with stuttering steps, a trembling hand and a blank stare showing no emotion makes it appear that the person is not really there. I am not at that point, but if I live long enough I probably will be. Similar to someone who has had a severe stroke, outside impressions may be worse than the reality. The disability is real, but most PD patients are mentally intact despite responding more slowly. Most PD patients are quite ‘with it’ and anxious to be engaged socially.

PD seems to hold a particular place in people’s minds as a terrible progressive disease from which there is no recovery. True as that is, most people with Parkinson’s live long and productive lives, albeit with handicaps that must be addressed. But as with any chronic disease, one manages the best one can and usually remains the same person inside of all of the daunting, outward physical signs. It is important to patients like me that people around us realize that, or one can become socially isolated.

Eventually, as with any chronic disease, I have to plan for the future. Planning for later is of course wise, but it confronts me with a reality that I would just as soon forget. As the complications worsen, I have to deal with more limitations. As much as the limitations may look terrible to someone on the outside, one learns to live within them and find new sources of satisfaction. It may sound Pollyannaish, but in some ways, it is a good time to grow internally, a time to appreciate life in a deeper way, to take one day at a time and to appreciate the companionship of people I care about. We don’t get to choose our diseases, and the worst curse is to withdraw and become isolated because your illness makes people anxious.

 

"Facilitated Communication" and the Sentencing of Professor Anna Stubblefield

Anna Stubblefield, former chair of philosophy at Rutgers, has been sentenced to 12 years in prison for rape of D.J., a 31 year old man with severe cerebral palsy who she insisted was mentally competent to consent to a sexual relationship. His family, the state, and the jury, saw him as severely disabled in cognition as well as motor capacity and incapable of a consensual relationship. (See here for my October post on the situation. Make sure to read the thoughtful comments as well!)

Professor Stubblefield "communicated" with D.J. by "facilitated communication," also called "supported typing," a technique in which the otherwise non-communicative person's hand is used to "guide" the facilitator at a keyboard. Multiple professional organizations, most recently the International Society for Augmentative and Alternative Communication, have studied the technique. The distinguished international review committee didn't mince its words: "...messages generated through Facilitated Communication are authored by the facilitators rather than the individuals with disabilities. Hence, Facilitated Communication is a technique that has no validity." (See here for the systematic review and here for the Society's formal position statement). Other groups, including the American Association on Mental Retardation, American Psychiatric Association, and the American Academy of Pediatrics, concur.

But facts don't change the position of true believers. Sadly, the sense of being beleaguered has led advocates to circle their wagons and advocate more vehemently. Professor Stubblefield's parents were educators with a passionate commitment to facilitated communication. They brought her up to have the same convictions, as she is doing with her own 16 year old daughter. People with severe disabilities like D.J. are often stigmatized and warehoused. Bringing out hidden potential, as dramatized so well by Daniel Day-Lewis in My Left Foot, is a noble aim. 

The pseudo-science of facilitated communication nests with concerns about social justice. Advocates feel that a misguided society is thwarting the efforts of (a) families to get help for their disabled children, (b) facilitated communication practitioners to carry out their belief that they can relieve suffering, and (c) disabled persons seeking to realize their potential. That's a powerful mix!

I see Professsor Stubblefield as a tragic victim of this witches' brew of passionate belief in a view that we all wish were true, but, alas, isn't. From the perspective of ethics we should ask - what is the right societal response? Here are what I see as the key considerations:

1. Facilitated communication has been proven to be a false theory.
2. It still has committed adherents who argue for the theory on the basis of anecdotes.
3. The anecdotes don't change the fact that the theory has been disproved.
4. Anna Stubblefield passionately believed (and, from what we know, still believes) that facilitated communication could rescue otherwise hopelessly disabled people.
5. She is not a sexual predator. No one suggested a pattern of exploitation on her part. (Unlike my own profession, where there have been psychiatrists who recurrently exploited patients for sex.)
6. She fell in love with D.J.
7. She firmly believed that D.J. loved her in return and was mentally competent to consent to a sexual relationship.
8. As I said in my previous post, even if D.J were competent, he was, in effect, Professor Stubblefield's patient, and having sex with him was unethical..
9. The jury found her guilty of initiating a sexual relationship with a person who could not consent. Despite her belief that the relationship was consensual, it must be seen as rape.

Professor Stubblefield does not appear to be a risk to society the way a serial rapist is. She believed she was doing something with D.J., not to him. But although a female professor of philosophy who has set out to help a severely disabled person does not fit our ordinary conception of a rapist, the fact that you love the person you are having non-consensual sex with does not change the fact that the action is rape.

For that reason, I see some time in jail as an appropriate societal response. But twelve years is excessive. From the perspective of ethics, a short incarceration, to make clear that society does not tolerate rape, even if false beliefs led the perpetrator to misperceive the rape as a positive, caring action. Jail would be followed by an extended period of probation that included prohibition of any and all practice or advocacy of "facilitated communication." In addition, Professor Stubblefield should make a full apology to D.J.'s family. To me that seems like the  right outcome for this tragic situation.

A Surgeon Explains and Defends Simultaneous Surgery

In the continuing discussion sparked by the Boston Globe Spotlight Team's reporting on simultaneous surgery, Dr. Alexander Langerman, a head and neck cancer surgeon from Vanderbilt, wrote an informative piece explaining and defending how he conducts the practice. I, as a non surgeon, found his description of the clinical aspects of the practice very informative, and I encourage you to read his article here.

I was especially happy with Dr. Langerman's discussion of informed consent:

If you’re a patient, in your first visit with a surgeon, ask about the plan for your case, the surgeon’s strategies for trainees, and the way the surgeon handles his or her surgical schedule. I encourage you to get to know any residents who may be involved in your operation; they are a highly valuable second set of eyes who have already completed college, medical school, and often years of training so their ideas, questions, and participation elevate care. I would argue you do not need to require the absence of trainees or the continuous presence of the surgeon but rather a well-thought-out plan that has your best interests in mind.

If you are a surgeon or part of a surgical team, discuss your plan with your patients. You should let them know whether a trainee will be participating in or handling a portion of the procedure, and you should let them know if you are going to be out of the room.

If Dr. Langerman's surgical colleagues had all followed his wise guidance, the practice of simultaneous surgery would not have had the shocking impact it had when the story broke.

New Massachusetts Regulations on Simultaneous Surgeries

Two weeks ago I posted about the practice of simultaneous surgeries. It had been the focus of a Boston Globe Spotlight series. Two days ago, the Massachusetts Board of Registration in Medicine - the body that regulates medicine on behalf of the state - ruled that surgeons must record when they leave and reenter the operating room. Nurses currently do this. At many hospitals, surgeons don't.

Simultaneous surgery raises two central questions: What is its impact on patient safety and surgical outcomes? And, what is the impact on patient and public trust of physicians and hospitals?

Dr. James Rickert, president of the Society for Patient Centered Orthopedics, correctly identified informed consent as the central ethical issue:

“I know that surgeons don’t think this is an important issue, so they assume that it’s not important to patients. However, this thinking is wrong. Patients want to know that their surgeon is the individual who actually operated on them, and I think they have a right to this information. We are talking about situations where patients are completely vulnerable and, by definition, there is a risk of death or severe bodily injury.”

I learned from an op ed piece in today's Boston Globe that the American College of Surgery has created a committee to develop policy about simultaneous surgery. The committee includes proponents and opponents of the practice.

There's an important lesson about health system ethics in all of this. Just as it takes a village to raise a child, it takes multiple components of civil society to promote an ethical health system. With regard to the practice of simultaneous surgery, the Boston Globe Spotlight Team brought the issue to a wider public. Individuals, like the author of the op ed I cited (Nancy Brinker, founder of the Susan Komen breast cancer charity) pitched in thoughtfully. A professional association - the American College of Surgery - is working on evidence-based guidelines for how the practice should be handled. Another professional organization - the Society for Patient Centered Orthopedics - nailed the fact that meaningful informed consent must be part of the process.

We tend to think about ethics in terms of individual conscience and behavior. But just as we have come to see quality of care as a system responsibility and errors as not simply the result of individual "bad apples," we must understand health system ethics as the responsibility of organizations as well as individuals. To improve the ethics of the health system we depend on ethical health organizations as well as vigilant individuals.

Informed Consent for Simultaneous Surgeries

Two months ago (here) and again today the Boston Globe Spotlight team wrote about the practice of having one surgeon doing two operations at the same time, moving between two operating rooms and leaving fellows or residents "in charge." Dr. Dennis Burke, a prominent orthopedic surgeon at the Massachusetts General Hospital, brought his concerns about simultaneous surgery to the Spotlight team. Dr. Burke has been dismissed from the hospital for showing redacted records from his own patients to the Globe team. 

Physician leaders at the Massachusetts General Hospital and elsewhere insist that there is no evidence that simultaneous surgery has led to worse outcomes for patients. And advocates defend the practice - which is common at leading hospitals, as (a) efficient use of skilled surgical time and (b) a way to reduce waiting time for patients. 

If simultaneous surgery were recognized as having even a small effect on patient safety, for reasons of prudence (malpractice liability and terrible publicity) as well as ethics, hospitals would not allow it. But let's assume that definitive studies showed there was no increased risk. What then?

Think about it personally. If you were going under the knife, would you want to know that your surgeon would be going in and out of the operating room to do surgery on another patient at the same time? I would. 

If there's no difference in outcomes, physicians might say - "why do I need to tell patients - there's no difference in outcomes?" The answer is that we have an ethical duty to give patients information that's important to them. I've done an informal survey among friends as to whether they regard the question of whether their surgeon would be doing two operations at once as something they would want to know about as part of their decision-making process. 100% said it is.

Revealing the possibility of another surgeon taking charge in the small print of an informed consent "contract" does not do the job. Good ethics requires open discussion. This may well be uncomfortable for surgeons, just as candor about how often they have done a procedure when they are early in the learning curve is. But it's what we owe our patients, and to the reputation of our profession as trustworthy, not devious and evasive.

Vietnam, Iraq, and Health Care Organizational Ethics

Vietnam was the shaping experience for my generation. In the later 1960s, all male physicians who were not conscientious objectors did some form of military service. I opposed the war in Vietnam and was active in anti-war demonstrations, but the law did not allow selective conscientious objection. To claim CO status one had to oppose all war, and the memory of World War II - which I regarded as a "just war" - was still fresh.

When I completed psychiatry training in 1968, I had the good luck of being an officer in the Public Health Service for two years at the National Institute of Mental Health. The "real" military who were stationed in the area dismissed us as "yellow berets." But notwithstanding the insult, I was proud of being an Public Health officer.

This past winter, when my wife and I were part of the faculty in the Semester at Sea program, we visited Vietnam for 6 days. That powerful experience led me to read six excellent books about our wars there and in Iraq:

• The Things They Carried (Tim O'Brien)
• Matterhorn and What it is Like to Go to War (Karl Marlantes)
• A Rumor of War (Philip Caputo)
• The Good Soldiers and Thank You for Your Service (David Finkel)

All six books were terrific. I recommend any and all to readers who want to know more about what the war experience was like for our military. But for this blog, I want to describe three "lessons" I took from the books about the ethics of health care organizations:

1. The culture of the unit (squad, platoon & company) has enormous influence on the ethics of the unit's behavior. The military has a deeply held commitment to taking care of its wounded and dead. Soldiers risked their lives to act on this value. And, in the opposite direction, Philip Caputo described a massacre-like event carried out by the unit he was leading when he, and his men, were engulfed by hatred for the opposing soldiers. Unit culture could lead ordinary men to become heroes or monsters.
   
   In health care organizations we should recruit staff who - whatever other skills and talents they have - are caring people. But we need to pay careful attention to building and sustaining a culture of care. Good people can do bad things when the culture they are in points in the wrong direction.
   
2. In all of the books it was strikingly clear that the behavior of leaders had a profound influence on the ethical performance of the individuals in the unit. When the leaders were models of admirable conduct, the soldiers were more ethically admirable in their own front-line conduct. When the leaders elicited cynicism, bad things ensued. In Matterhorn there's a scary incident in which a soldier actually tries to kill the commander.
   
3. Being in a war shapes soldiers, both for better and worse. Retired General Peter Chiarelli (described in David Finkel's books) was so moved by what he learned about traumatic brain injury, post-traumatic stress, and suicide among veterans, that in his retirement from the military he is devoting himself to suicide prevention. In health care we're not literally in combat, but there are "war-like" experiences in fighting for the health of individual patients. More of us need to emulate General Chiarelli and move from immersive front-line experience to advocacy for social justice and societal benefit. (See here and here for stories about General Chiarelli.)

I've been critical of the ubiquitous use of war metaphors as seen in obituaries that describe the deceased person's "heroic fight with cancer/heart disease...." When physicians feel that death is their mortal enemy they are at risk for overtreating patients. Over the years I've heard students use the term "flogging," as in "the oncologists are flogging the patient again with another treatment that will just make him sicker..." But there are other aspects of war that model what we should strive for in health care: ethical leadership, a culture of caring, and experience-based advocacy.

Keep Sound Minds

In 2008 I blogged about how after Marci Thibault, in a state of psychosis, walked into New Hampshire traffic with her twin sister Danielle's two young children, killing them all, Danielle and her husband Ken formed a not-for-profit devoted to "prevent[ing] similar incidents from occurring by improving society's understanding and management of mental health issues."

Keep Sound Minds, the organization Danielle and Ken founded, is hosting an event in Woburn, Massachusetts, on Saturday evening May 18. I have the privilege of being one of the speakers, along with Ken and Danielle. The event is co-sponsored by the Wellstone-Barlow Mental Health Initiative. David Wellstone is son of the late Senator Paul Wellstone, who crusaded for mental health causes. Ken Barlow is a popular TV meteorologist in Minnesota who recently "came out" about having bipolar illness. (See here for a great interview with him.) Their organization is devoted to de-stigmatizing mental illness. David Wellstone and Ken Barlow will also speak.

I encourage readers to go to the Keep Sound Minds website and to watch the interview with Ken Barlow. And, if you're in the area, come to the event on May 18th and tell folks you know who have a special interest in mental health matters about it.

Industry, Medicine and Medical Ethics

This morning I co-chaired a meeting of the Massachusetts Association of Health Plans (MAHP) Ethics Forum that used the Massachusetts Gift Ban law as an entry point for discussing the relationship between the medical products industry and the medical profession.

Marcia Hams, program director of the Community Catalyst Prescription Access and Quality Program and Tom Stossel, director of translational medicine at the Brigham & Women's Hospital, kicked off the discussion. Many pharmaceutical companies are affiliate members of MAHP, so participants included pharmaceutical folks as well as health plan medical staff.

What struck me most about the excellent discussion is how the absence of an overall budget for health care has tilted public discourse in a polarized black and white direction. Marcia Hams made a strong, thoughtful advocacy argument that pharmaceutical marketing activities contribute to increased costs and negative impacts on quality. Tom Stossel made a strong, thoughtful advocacy argument that pharmaceutical marketing activities contribute to decreased overall costs and quality improvements.

If we had an overall budget for our health system, or real budgets for components of the system, we'd be having a different set of discussions. Instead of arguing about whether industry influence on medical practice and health care costs is good or bad (it's both), we'd be discussing questions like whether a particular intervention created enough value to justify its use, and how its cost-effectiveness measured up against alternatives.

Many in the policy community argue that the U.S. population is unwilling to recognize and accept limits in health care. In my view, the scattered structure of our health system - most notably, the absence of overall budgets - has made it difficult for us to consider relative value, trade offs, and opportunity costs. By now we're habituated to not thinking about these questions, which makes us progressively immature as a body politic and vulnerable to nonsense like "death panels" and fear that the Affordable Care Act will lead to a government mandate that we all eat broccoli!

(This has been the longest time without a post since I started the blog almost five years ago. I've been unusually busy with teaching activities and a number of projects. It's good to be back!)

Autism, Access to Services, and Social Justice

Yesterday the CDC released a report on the prevalence of autism spectrum disorders (ASD) that demonstrates a continuing increase in ASD diagnoses. In 2008 1 child in 88 received the diagnosis, compared to 1 in 110 in 2006 and 1 in 155 in 2002.

There are three major possibilities behind the increase. They're not mutually exclusive:

1. A pathological process such as an environmental toxin or infectious agent is behind a true increase in the incidence of ASD.
2. The true incidence of ASD is stable, but parents and clinicians are becoming more alert to the condition and more skillful at making the diagnosis.
3. ASD diagnosis facilitates access to services that may provide great benefit to a child. This opportunity gives instrumental value to being diagnosed with ASD.

I am not a child psychiatrist and was never involved in evaluating and treating children for ASD. But from my experience in adult psychiatry, I have some ideas about what's behind the increased frequency of ASD diagnosis.

When I first joined the Harvard Community Health Plan practice in 1975, insurance regulations allowed 20 outpatient psychiatric visits per year for the full range of psychiatric conditions. More "serious" diagnoses did not produce access to more insurance coverage. As a result, in situations of ambiguity, I and my colleagues chose "milder" diagnoses, since more "serious" diagnoses could have unintended side effects, such as not being eligible for life insurance in the future, job discrimination, and a change in self-image to see oneself as "sicker."

In the 1980s the insurance benefit changed. Those with more severe conditions had access to more insurance coverage for outpatient benefits. Given the instrumental benefit of more "serious" diagnoses (access to more treatment), it's not surprising that the prevalence of these diagnoses increased! Patients hadn't changed, but the secondary implications of how we diagnosed their disorders had.

These changes in diagnosis weren't fraudulent. The phenomena on which psychiatric diagnoses are based are part of a spectrum. There's a great deal of "gray zone." The change in secondary implications can lead to a change in perception - clinicians, patients (among adults), and concerned parents (for children) - are more attuned to looking for the data that yields a potentially "beneficial" diagnosis. And in circumstances of genuine ambiguity, clinicians, patients, and family, may choose the alternative that yields the most potential benefit for the patient.

If I'd had a child 30 years who might possibly fall into the ASD spectrum, I would have resisted the diagnosis. Stigma was very high, and hope was very low. An autism diagnosis was a form of death sentence. Better not to apply the label and to hope that the child was going through a severe "phase" that would be outgrown.

If I had an identical child now I'd ask for an ASD evaluation. Stigma has been much reduced, and improvement is seen as much more possible. And, in many communities, special educational services and special clinical interventions are now available by law.

I have no doubt that the combination of reduced stigma, increased optimism, and access to therapeutic resources, all contribute to the increased frequency of ASD diagnosis.

Unfortunately, the positive change in social justice for children who are now diagnosed with ASD causes a negative change in the educational system. Many of the new resources for ASD intervention come out of strained local school budgets. This, sadly, often pits parents and other advocates for ASD care against parents and advocates for educational services for "non-ASD" children.

Advocates for "special education" and "mainstream education" should band together. Both are advocating for key social values. Rather than fighting against each other within limited school budgets they should, ideally, join together on behalf of improved developmental opportunities for all children!

(For a New York Times article that summarizes the CDC report, see here. For a previous post about the potential for fraud in relation to autism, see here.)

Wartime Heroism and Personal Ideals

I'm sorry I never met Dr. Tina Strobos, whose obituary I read in this morning's Boston Globe. But I have a new hero.

Dr. Strobos was a 19 year old medical student in Amsterdam when Nazi Germany invaded in May, 1940. When she and her fellow students refused to sign a loyalty oath to Adolf Hitler, the school was closed.

Dr. Strobos joined the Dutch underground, initially ferrying arms and supplies to resistance fighters. Then she turned to helping her Jewish friends and ultimately others to escape. She and her mother had a secret room constructed on the third floor of their Amsterdam home, just a short walk from the home that sheltered Ann Frank and her family. It became part of an underground railroad for escapees. During the war they helped save 100 Jews, for which, in 1989, the Yad Vashem Holocaust Museum in Jerusalem honored her and her late mother as "righteous among the nations."

 After the war Dr. Strobos came to the U.S. and studied child psychiatry. Despite extensive Google searching I haven't been able to learn much about her career. She appears to have run a treatment facility in Rye, N.Y. One listing said it was for people with chronic psychiatric ailments. Another site said she'd helped Katrina victims. I like to think that her work as a psychiatrist carried forward the same values she lived by during her years of wartime heroism.

I've thought a lot about the concept of health care as a "calling." For religious persons the call may come from their God. But what about agnostics and atheists? Dr. Strobos answered this way: "I never believed in God, but I believed in the sacredness of life." This outlook ran in her family. Her mother and maternal grandmother were also athiests, socialists, and activists. During World War I her grandmother had also hidden refugees! And all three of her children work in helping professions.

Dr. Strobos seems to have been a practical idealist. During the war, along with her work in the resistance, she also sought opportunities to continue her medical studies. "You have to be a little bit selfish and look after yourself; otherwise you just die inside, you burn out. There's just so much you can do for other people."

I'm proud to be part of the same psychiatric profession as Tina Strobos!

(For a moving video of Dr. Strobos receiving an award from the Holocaust and Human Rights Education Center in 2009, see here. For additional details on her life, see here, here, and here.)

A New Blog About Medicare

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!