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.)

Patient Autonomy after Death - the Case of Anne Sexton

I hadn't thought about the controversy surrounding Diane Middlebrook's biography of Anne Sexton since its publication in 1991 until I saw a recent Boston Globe article about Dawn Skorczewski's new book about Sexton.

Sexton's first psychiatrist, Dr. Martin Orne, had made tapes of psychotherapy sessions available to Middlebrook, for which he was roundly condemned, as in a New York Times editorial titled "Betrayed: The Poet and the Public":

Anne Sexton likely assumed that the relationship between psychiatrist and patient was as confidential as that between priest and penitent. Anyone who enters therapy does so with that assumption. Confidentiality is at the heart of the process. Betrayal is, or should be, unthinkable.

By taking the tapes, Ms.Middlebrook followed her profession. But by offering them, Dr. Orne dishonored his.

Sexton became Orne's patient in 1956 when she was hospitalized after a suicide attempt. At the time she was a depressed and lost housewife with a high school education. Orne encouraged her to respect her latent strengths and find ways to make her life feel more meaningful. Sexton began to write poetry. Her first book - To Bedlam and Part Way Back was published in 1960. In 1967 she won the Pulitzer Prize for Live or Die.

Sexton's symptoms interfered with remembering what happened in therapy, so in 1960 Orne began to record sessions. Sexton would then listen to the tapes and make notes. This unconventional technique was very useful to her. She continued in treatment with Orne until Orne moved from Boston to Philadelphia in 1964.

But Sexton was never free from the impact of mental illness. On October 4, 1974, a year after separating from her husband of 25 years and being dropped by her third psychiatrist, she committed suicide.

In my review of contemporary comments on Orne's allowing Middlebrook to listen to the tapes, I was impressed with how scathing the criticism was. Dr. Willard Gaylin, Professor of Psychiatry at Columbia and co-founder of The Hastings Center, who I admire but do not know, said:

Doctors have no obligation to history and certainly should not act as a research assistant to a biographer...[Dr. Orne's actions were] a betrayal of his patient and his profession.

And my good friend Dr. Jeremy Lazarus, who in 1991 was chair of the American Psychiatric Association Ethics Committee and is now President-elect of the American Medical Association, commented:

A patient's right to confidentiality survives death. Our view is that only the patient can give that release. What the family wants does not matter a whit.

The position Drs. Gaylin and Lazarus took about Orne's release of the tapes followed from an opinion rendered by the American Psychiatric Association Ethics Committee in 1983:

Question: Can I give confidential information about a recently deceased mother to her grieving daughter?

Answer: No. Ethically, her confidences survive her death. Legally this is an unclear issue varying from one jurisdiction to another. Further, there is a risk of the information being used to seek an advantage in the contesting of a will or in competition with other surviving family members.

 Three years later the Ethics Committee was questioned as to whether this opinion was too rigid:

Question: It seems to me your earlier opinion about revealing confidential information after the death of a patient is too restrictive. Can there be exceptions?

Answer: Theoretically, yes, although such a circumstance has not yet been brought to our attention. As with maintaining the confidences of a living patient, exceptions can be made to protect others from imminent harm or under proper legal compulsion. However, weakening this view reduces our responsibility to living patients who trust us to protect their confidences even after their death.

I agree with the questioner - the 1983 opinion is at best a half truth, and potentially a source of dubious ethical advice.

If the information at question had clearly been regarded as confidential by the deceased person - as by saying "this is for your ears only" - of course the confidence should apply in death as it did in life. But suppose the deceased patient had given no explicit guidance, but had loved and trusted her daughter? If the daughter had asked for information or to talk with the psychiatrist when her mother was living, the psychiatrist would have asked his patient/her mother for guidance. In that spirit, after the patient's death I believe the right thing for the psychiatrist to do is to make the best judgment he can about what his patient would have wanted him to do. Simply treating anything for which explicit anticipatory guidance wasn't given as confidential can result in harms to the living the deceased patient would have wanted to avoid.

That's the thought process Dr. Orne followed with regard to the psychotherapy tapes. In an op ed in the New York Times he wrote:

In 1964, when I left Massachusetts, I offered to return all of the therapy tapes to Anne. She asked that I keep them to use as I saw fit to help others, though she retained a few for herself...In the judgment of all who knew her well, Anne definitely would have wanted the tapes released exactly as was done. What others would see as exposure, she saw as honesty. Sharing her most intimate thoughts and feelings for the benefit of others was not only her expressed and enacted desire, but the purpose for which she lived.

Posthumous judgments aren't infallible. If there's life after death, Anne Sexton's spirit might say - "Doc, you got it all wrong about the tapes!" But Orne made a responsible determination, based on his own direct experience with Sexton, the view of her daughter (the executor), and the views of people like poet Maxine Kumin, Sexton's best friend. That kind of judgment is the best we can do.

What survives a patient's death is our commitment to conducting the relationship in accord with the patient's wishes within the parameters of professional responsibility. If a patient wanted revenge against a family member we wouldn't carry it out. But on the basis of a thoughtful conclusion that Anne Sexton would have wanted Diane Middleton to be able to listen to the tapes, Orne was continuing to relate to his patient in a respectful, caring manner!

Goldman Sachs, Corporate Culture, and Medical Ethics

When Greg Smith, an executive director at Goldman Sachs, and head of the firm's US equity derivatives business in Europe, the Middle East, and Africa, explained why he resigned from the company in a remarkable New York Times op ed piece two days ago, the story went viral. Here's the essence of what he had to say:

After almost 12 years at the firm...I believe I have worked here long enough to understand the trajectory of its culture, its people, and its identity. And I can honestly say the environment now is as toxic and destructive as I have ever seen it....I have always taken a lot of pride in advising my clients to do what I believe is right for them, even if it means less money for the firm. This view is becoming increasingly unpopular at Goldman Sachs...I attend derivatives sales meeting where not one single minute is spent asking questions about how we can help clients. It's purely about how we can make the most possible money off of them. If you were an alien from Mars and sat in on one of these meetings, you would believe that a client's success or progress was not part of the thought process at all.

Years ago, my friend Marc Bard, a brilliant consultant, taught me the aphorism - "culture beats strategy every time." This is perhaps especially true in health care, which is so strongly mission-driven. If the shared culture of a health organization is truly patient centered every action will express the organization's values.

I experienced how culture works especially clearly 19 years ago, when my father, near the end of his life, was a patient at the Lahey Clinic. In my distracted and distressed state, I locked my keys in my car. I went to the building services office to get help. A staff member (a) picked the car's lock with expertise, but also (b) conducted excellent common sense psychotherapy with me around how we get forgetful when we're upset, and (c) said he would pray for my father. Remembering the incident and writing about it here brought tears back to my eyes. I'm happy that I wrote to the CEO to report on the excellent care I received from his non-clinical staff and to congratulate him on the culture of the organization.

I'm lucky that the four health organizations I've been part of during my career - the Massachusetts Mental Health Center, Harvard Community Health Plan/Harvard Vanguard Medical Associates (HCHP morphed into HVMA), the Harvard Pilgrim Health Care insurance company, and the Harvard Pilgrim Health Care Institute,  have all had cultures and evinced values I've been proud to be associated with. I doubt, however, that the people at those organizations were intrinsically more ethical than the colleagues Greg Smith is writing about.

When one's colleagues and the leaders of an organization share core values they reinforce each other. Newcomers are selected for fit with the culture, and the culture (what educators call the "hidden curriculum") brings out the best in us. It's easier for a health organization than for Goldman Sachs to cultivate a positive culture because the mission of caring for people who are suffering encourages empathy. I'd like to believe that I'd leave as Greg Smith did if I found myself part of an organization with a environment that is "toxic and destructive" and was unable to influence it, but knowing the human capacity for self-delusion, I can't be smug and certain that I wouldn't follow the same playbook Greg Smith discerned at Goldman Sachs.

Aristotle conceptualized "character" as an inner state or way of being that shows itself in the patterns of our actions. "Culture" is the organizational equivalent of "character." Culture is partly formed by the characters of those who constitute it, but the influence goes both ways. In trying to understand our human natures, we need to consider "culture" and "character" along with "nature" and "nurture."

Raw Zucchini Pasta with Marinara Sauce

This dish is a raw favorite. Not only is it a good idea to increase your plant-food intake, but also to include more raw foods and meals.  I love this pasta because it amazes me how much it tastes like the cooked version.  You can make this dish in minutes and warm it lightly without destroying the enzymes. I made a Walnut Parmesan Cheese and sprinkled it on top. You can use either a Julienne Peeler  to make the noodles or a spiral vegetable slicer. I have the orange Julienne Peeler, which is what I used to create the noodles for this dish. I put a long wood skewer into one end of the zucchini and draw the julienne peeler down all sides of the zucchini until you reach the core. Holding onto the wood skewer protects your hand from the peeler's sharp edges. The julienne peeler is extremely easy to use when using this method. I hope you will give this healthful dish a try - I know you will absolutely love it!

Raw Zucchini Pasta with Marinara Sauce

Printable Recipe 

Serves 3-4

4 zucchini, peeled (peeling is optional)

1 cup Marinara Sauce (see below)

Cut the zucchini into thin noodles using a vegetable spiral slicer.  Alternatively, use a vegetable peeler to create long ribbons, or “fettuccini,” by drawing the peeler down all sides of the zucchini until you reach the core.  Place in a medium bowl and toss with the Marinara Sauce.  Serve immediately.

Marinara Sauce:

Yields: 1 cup

1 ripe tomato, seeded and chopped (about ½ cup)

½ cup sun-dried tomatoes, soaked or oil-packed (drained)

½ red bell pepper, chopped (about ½ cup)

2 tablespoons extra-virgin olive oil

1 tablespoon minced fresh basil, or 1 teaspoon dried

1 teaspoon dried oregano

½ teaspoon crushed garlic (1 clove)

¼ teaspoon plus 1/8 teaspoon sea salt

Dash black pepper

Dash cayenne

Place all the ingredients in a food processor fitted with the S blade and process until smooth.  Stop occasionally to scrape down the sides of the bowl with a rubber spatula.  Stored in a sealed container in the refrigerator, Marinara Sauce will keep for three days.

Recipe from: Raw Food Made Easy – Jennifer Cornbleet

Raw Parmesan

Makes 1/2 cup

1/4 cup walnuts

1/4 cup nutritional yeast  (Kal, nutritional yeast is fortified)

1/2 tsp. sea salt

(grind in small blender until fine)

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• Read more about CyberKnife at Pennsylvania Hospital
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Is This Doctor-Patient Marriage Unethical?

I shouldn't have been surprised that the most read posts on this blog have been about doctor-patient sex. When I recently had occasion to review these posts a comment I received on April 23 last year caught my attention:

Let us face it squarely. There are only 4 women that a newly qualified overworked doctor intern is exposed to: a fellow doctor (usually out of reach), a nurse (may lead accusation of sexual harassment) a bar waitress (usually not of the best social character) and the patient. I chose the latter and am happily married to her for 8 years. Did I breach the ethics? Can a distinction be made between sexual attraction and real love?

In my response I made an initial sortie into the connection between professional ethics and the ethics of personal relationships. But in retrospect I wish I'd been clearer:

Congratulations on 8 happy years of marriage. I don't know what area of medicine you're in, and what its code of ethics states. In my own specialty - psychiatry - the code asserts that sex with current or former patients is unethical. So if you're a psychiatrist, the code answers your question - you did breach the ethics of the specialty....

So - you may have violated the ethics of your area of medicine, but I'm guessing that you and your wife distinguished right from the start between "real love" and "sexual attraction." You have 8 years of evidence that you got it right! For you as individuals the professional ethics precept would have been a bad guide. 

Suppose the ethics committee of the former intern's medical specialty were asked to review the ethics of the relationship he formed with his patient 8 years ago. For my specialty (psychiatry), the answer would be unambiguous. Forming a romantic or sexual relationship with a current or former patient is defined as unethical.

Given that he violated the ethics of his specialty, should he be disciplined?

If there had been no problems in his medical practice in the subsequent 8 years I think the right outcome would be (a) to reaffirm the correctness of the ethical standard but (b) to find a way of not disciplining him, while (c) being careful not to set a precedent that undermines the standard.

The rationale for defining romantic/sexual relationships with current and former patients as unethical is twofold: to protect patients from the harms that these relationships can cause, and to prevent the loss of trust in the profession that would accrue if the public concludes that physicians are prepared to exploit patients for personal gain, as by "hitting" on them. The former intern's happy marriage isn't evidence against the standard. The standard doesn't claim that every doctor-patient romantic/sexual relationship will result in harm, just that we know that harm is a significant possibility and is difficult to predict. And the happy marriage says nothing about the overall trustworthiness of the profession.

If this was a current question for a physician with no pattern of exploitation, an ethics committee might require an extended period of supervised practice. Assuming the former intern has practiced in exemplary fashion for 8 years, that would exceed what a probationary period would entail. As a member of the specialty society it's important for him to understand and support the ethical precepts of the society. As a response to the violation that occurred 8 years ago, the ethics committee might ask the former intern to write an essay on how he would respond to a colleague who asked him: "Look how well your doctor-patient relationship worked out - why should I follow the ethical standard on this?"

If the intern's medical specialty and medical society held the same standard as the American Psychiatric Association, the relationship he formed with his patient violated the ethics of the profession. But his report of 8 years of happy marriage suggests that the ethics of his personal relationship is excellent. The professional and personal domains overlap, but not totally. Four years ago I argued that the Karolinska Institute in Stockholm did the right thing in expelling a medical student who had been convicted of murder 8 years earlier, even though he performed competently in his student role.

In the U.K. the medical profession does not have a blanket ethical rule against romantic/sexual relationships with former patients. The General Medical Council (GMC), whose role is to "ensure proper standards in the practice of medicine," has formulated guidance about professional boundaries in terms of personal ethics. Recast to eliminate reference to the doctor-patient relationship, the values in the GMC espouses could form the basis of a high school or college class on relationship ethics:

• You must not pursue a sexual relationship with a former patient, where at the time of the professional relationship the patient was vulnerable, for example, because of mental health problems or because of their lack of maturity.
• Pursuing a sexual relationship with a former patient may be inappropriate, regardless of the length of time elapsed since the therapeutic relationship ended. This is because it may be difficult to be certain that the professional relationship is not being abused.
• If circumstances arise in which social contact with a former patient leads to the possibility of a sexual relationship beginning, you must use your professional judgment and give careful consideration to the nature and circumstances of the relationship, taking account of the following:
     (a) when the professional relationship ended and how long it lasted
     (b) the nature of the previous professional relationship
     (c) whether the patient was particularly vulnerable at the time of the relationship, and whether they are still vulnerable
     (d) whether you will be caring for other members of the patient's family

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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.)