Self-Disclosure in the Clinic and the Classroom

As I mentioned in a recent post, I'm in Vermont while my wife teaches at the Middlebury College Bread Loaf School of English, a program in which the students are primarily high school and middle school English teachers.

Tomorrow I'll be leading a second workshop on "Making Ethics Part of High School and Middle School English Class."At the workshop on June 30th the teacher/students identified a topic they wanted to come back to: should they bring their own moral and political selves into the classroom, and if the answer is "yes," how should they do it?

I've never taught in high school or middle school and can't claim any direct expertise on how to deal with the question the teachers raised. But I've given a lot of thought to what is typically called "self-disclosure" in medical care and have written about it (see here). In contrasting the issue as it comes up in the clinic and the classroom, I see self-disclosure as a vastly tougher question for high school and middle school teachers than it is for physicians and other clinicians.

In the clinic, self-disclosure occurs largely in a 1:1 setting - the patient and the doctor. The major question for the physician is whether self disclosure will further the clinical objectives. Research suggests that the impulse behind self-disclosure is often fulfillment for the doctor more than benefit for the patient. The commonest risk is that the patient will feel less listened to and less rapport. The most serious risk is that physician self-disclosure will lead to a slippery slope of increasingly intimate interactions. Many situations that end with doctor-patient sex began with physician self-disclosure.

When we physicians contemplate self-disclosure we should ask ourselves three relatively straightforward questions. First, a bit of introspection: do we tend to talk about ourselves too much? If so, we should be especially on guard. Second, is there anything special about our relationship with this patient - such as a wish to impress the patient or to be his friend  - that draws us towards self-disclosure? Finally, what is the rationale for anticipating that self-disclosure will help the patient?

In high school and middle school, the teacher is an adult dealing with a classroom with 15 - 30 youngsters. Student reactions, of course, are likely to vary, so there's no way to guage the potential impact on every student in advance.  But the most challenging aspect is the school setting itself. Even if the patient-physician dyad occurs in an organizational setting like a clinic or group practice, it's primarily a two person relationship. By contrast, English class is just one piece of the student's relationship with the school. And in the background, the students' families properly regard themselves as having a central role in their child's education.

To prepare for the workshop I tried to imagine myself as a new high school or middle school teacher thinking about self-disclosure in the classroom. I pictured a series of steps to help me develop an approach:

1. Talk with my experienced colleagues. How have they handled self-disclosure in their classes? What guidance can they give me?
2. Talk with my department chair and perhaps the principal. They are responsible for and most knowledgeable about the school's relationship with its community. Are there issues of particular sensitivity to be aware of?
3. Consider the environment the students come from. What is the cultural starting point for the class likely to be? How will this influence how the students hear me?
4. Examine my own skills. Am I someone who students can feel comfortable questioning or challenging? Can I model a stance of curiosity and mutual respect?

I'm looking forward to learning from the teachers who will participate in the workshop. What a privilege it is to be able to explore ethics in the classroom with a group of experienced and devoted teachers!

Does Freedom of Speech allow Rejection of a Court's Findings?

In June I wrote about David and Collet Stephan being sentenced to jail for the death of their two year old son Ezekiel. David and Collet treated him with naturopathic remedies and did not respond to clear indications that Ezekiel was developing dangerous meningitis until it was too late. The judge acknowledged that they loved Ezekiel and were trying in their way to help him, but concluded that they did not have a right to choose their own beliefs over mainstream health care. He sentenced David to four months in jail, but allowed Collet to serve a three month sentence under house arrest.

The aftermath so far is fascinating. Both sides are appealing The "Crown" (Canada's term for the "state") is appealing the sentence as too lenient, on the following grounds:

 - The sentence is not proportionate to the gravity of the offence or to the degree of responsibility of the offender, and is unfit.

 - The Sentencing Judge gave insufficient weight to denunciation and deterrence.

- The Sentencing Judge underemphasized, or failed to give weight to, relevant aggravating factors.

- The Sentencing Judge overemphasized mitigating factors, or gave mitigative weight to factors that are not mitigating. 

- The Sentencing Judge misinterpreted the legal doctrine of wilful blindness.

"Wilful blindness"is a legal term referring to motivated ignorance. The Crown is alleging that the Stephans chose to ignore the obvious fact that Ezekiel needed urgent medical attention because of their cult belief in "natural" remedies.

The Stephans have appealed their conviction. A friend from Canada told m that the appeal is based, at least in part, on free speech grounds. According to my friend they argue that the judge's requirement that they post an unedited copy of his ruling on their website infringes on their right to freedom of speech. (I haven't been able to find the details of their appeal.)

David Stephan's two "letters from jail" (here and here) show him to be a principled believer in a false doctrine. He is convinced that he is taking a stand for justice, to protect other parents from intrusions of the state.

I believe, however, that the judge threaded his way between punishment and mercy in an admirable manner. The judge and jury concluded that David and Collet were guilty of failing to protect their son from preventable harm. From my reading of the media reports this was a correct finding. But the judge recognized that the Stephans were loving parents, acting on their longstanding beliefs. They meant well for their son, but they did him the ultimate harm.

The judge gave David, who he saw as the leader of the belief system, a short jail sentence, but allowed Collet to serve on home detention so that she could care for the children. I supported and continue to support his requirement that his findings be posted on the Stephan website. While the Stephans totally disagree with the findings, they have been convicted under the law. Their website promulgates the cult beliefs that led to their son's death, and could do the same in another family. Posting the judge's findings does not abridge their speech rights. They can, and will, continue to disagree the the judge and jury and to speak up for their false naturopathic doctrines. This is their right in a democratic society.

But if they persist in refusing to post the  judge's findings I would favor requiring Collet to serve her sentence in jail once David is out and could care for their children. I do not know the Canadian precedents for contempt of court, but it would seem that a substantial fine and an extended period of probation would be warranted.

I believe the Stephans deserve respect for the principled way in which they assert their beliefs. In their view they are standing up for truth and justice. David is careful to say that he discourages his supporters from anger or hatred. This is admirable. But in the democratic society of Canada, the Crown is the legitimate authority for ruling on the situation. If David can persuade the public to change the law, the situation will be different. But under the law, the judge has ruled correctly.

Jail Time for Parents for letting Toddler Die from Meningitis

Last week a Canadian court sentenced David Stephan to four months in jail and his wife Collet to three months of house arrest for their role in the death of their 19 month old son Ezekiel in 2012.

When Ezekiel became ill, his parents thought he had some form of "flu," and treated him with herbs and a mixture of apple cider, vinegar, horse radish root, hot peppers, mashed onion, garlic and ginger root. A friend who was a nurse told them he might have meningitis, but they persevered in their efforts to treat him by the "natural" modalities they believed in. A witness testified that when they drove Ezekiel to a naturopathic clinic, he was too stiff to sit in his car seat. As his condition worsened, his parents had to feed him with an eye dropper. They only summoned medical help when Ezekiel stopped breathing. The child suffered severe brain damage from anoxia and died a few days later.

David and Collet are part of a community built around vaccine refusal and faith in "natural" remedies. David's father Anthony founded TrueHope, after his wife, who suffered from bipolar illness, committed suicide. The company markets EMPowerplus, a "natural" product that they claim as a cure for bipolar disorder, depression, and even autism. Ezekiel's father David is Vice-President of the company.

David and Collet were convicted under a Canadian law that requires parents "to provide necessaries of life for a child under the age of sixteen years." The prosecution asked the judge to sentence them to 3.5 - 4 years in prison, close to the maximum the law allows (5 years). The judge called that "too harsh." He required prison for David because David refused to take responsibility for his actions. He asserted that a government conspiracy to squelch vaccine refusal was at work, and blamed Ezekiel's death on faulty ambulance care. In the judge's view, Collet was less responsible for Ezekiel's death. In addition to house arrest, he required her to publish his findings on her website. After their jail and house arrest terms, David and Collet will be on probation for two years, and will be required to obtain regular medical attention for their children.

Adults capable of making decisions are and should be free to choose no treatment or quack interventions. But they should not be free to refuse potentially life saving interventions - like antibiotics for bacterial pneumonia - for their children. Seen through the lens of both law and ethics, the judge ruled correctly. David and Collet loved Ezekiel, but they - especially David - made decisions a "reasonable" parent would know to be wrong. Ezekiel paid for their commitment to their "naturopathic" doctrines with his life.

(For a compendium of articles on the situation, see here.)

Religious Ethics and Medical Ethics

The Jewish New Year - Rosh Hashanah – starts this evening, and the New York Times featured a front page article on “Bar Mitzvahs Get a New Look to Build Faith.” The article touched a very personal nerve for me.

Both my parents and all of my grandparents were Jewish, but the family I grew up in was very non-observant. We didn’t belong to a synagogue and didn’t celebrate the Jewish holidays, other than a very perfunctory Seder at my father’s ailing mother’s home in Brooklyn. But at 11 or 12 I asked my parents to send me to Sunday School, an almost unheard of request for a child to make. As best I can recall, I wondered how the universe was created and what my purpose in life should be, and had the idea that religion might help me answer these questions.

They enrolled me in Temple Emanu-El, a large reform congregation that was founded in 1845. I quickly concluded that I’d made a mistake. In class we memorized prayers in a language I didn’t understand, studied holiday rituals, and learned about the history of the Jewish migration to the US. We didn’t touch the big questions I was interested in. When I said I wanted to quit my father asked me to stick it out for the sake of his mother, who was happy at the idea of my having some Jewish education, even if it ended in a confirmation ceremony and not a bar mitzvah.

It’s clear to me in retrospect that I was searching for a community that shared fundamental values and collaborated in actions based on those values. I didn’t find what I was looking for at Temple Emanu-el, but during the summer when I turned 16 (and in the two summers after that) I worked as a counselor at Felicia Madison, a camp that served poor children from New York City. When I got to college I was able to create a combined major in philosophy and psychology – a program that let me explore the kinds of questions I had in mind in asking to go to Sunday School. And I worked as a volunteer at a public mental hospital, which led to a career in psychiatry and medical ethics.

I believe that an anthropologist studying my affiliations would see the involvements with psychiatry and medical ethics as structurally similar to an involvement with religion. I consort with colleagues who share an outlook on the world, values, and a commitment to forms of action. There’s no theology, but it is a community of belief.

The New York Times article describes an initiative by 80 congregations to place more emphasis on values, community engagement, and social action, than on theology and ritual. The problem the congregations are trying to solve is family departure from the congregation as soon as the bar or bat mitzvah has been accomplished.

If I’m forced to define myself in terms of religion I identify myself as “a religiously-minded Jewish atheist.” In my clinical practice I found religious language natural to use – “that’s something to pray for,” “if it happens it will be a blessing,” “XYZ is your calling,” and more. When a patient with chronic schizophrenia asked me to remember him in my prayers I said I would, even though I don’t do anything a religiously observant person would call “prayer.” I felt that his request was for me to care deeply about him and his quest for well-being, and since I did, I felt it was truthful to say I would remember him in my prayers.

At the end of his life my father turned against all religions because he saw them as sources of hatred, slaughter and war. He was thinking of fundamentalist religion. In my view all “liberal religions” are comparably true and good, and all “fundamentalist religions” are comparably false and bad. As I examine the course of my adult life, it’s clear that the calling of medicine has been my version of liberal religion.

Should You Kill Your Disabled Child?

I've just read a remarkable book about this question: Rescuing Jeffrey, by his father, Richard Galli. I got to the book via "Calling It Quits: When Patients or Proxies Request to Withdraw or Withhold Life-Sustaining Treatment After Spinal Cord Injury," an article assigned to Harvard Medical School students for this week's class on end of life care in the required course on "Medical Ethics and Professionalism."

On July 4, 1998, Jeffrey Galli, 17 at the time, dove into the shallow end of a swimming pool and fractured his neck, injuring his spinal cord in a way that left him quadriplegic and unable to breathe without ventilator support. Richard saved his life by pulling him out of the pool and breathing through his nose. But when Jeffrey got to the Hasbro Children's Hospital in Providence, Rhode Island, and the extent of his injury became clear, Richard and his wife Toby considered whether the right thing to do would be to withdraw treatment and let Jeffrey die.

Galli renders the anguished flow of his thoughts and feelings in admirably spare prose. Not surprisingly for a 17 year old, Jeffrey had given no guidance about he would want to have done in a situation like the calamity he experienced. In his initial state of unconsciousness, and the next few days of impaired awareness, his parents had to make decisions for him. Galli initially felt that Jeffrey - a very physical boy who was not drawn to reading or other forms of "living in his mind" - would not be able to tolerate the helplessness and immobility of quadriplegia. But he recognized that he wasn't a reliable decision-maker. Perhaps he was the one who couldn't tolerate Jeffrey's condition. Galli conveys the way thinking about Jeffrey mixed with projection onto Jeffrey brilliantly. At one point he imagines pulling the plug on Jeffrey and then committing suicide himself!

When Jeffrey started to regain consciousness and began to fathom what had happened, his first reaction was "I want to die." But over the course of the ten days Galli's narrative describes Jeffrey first oscillates between wanting to die and wanting to live, gradually settling on the will to survive.

Galli provides a service to clear thinking by using harsh words to bring out harsh facts. For him the question isn't whether to "withdraw medical treatment from Jeffrey" but whether to "kill Jeffrey." In part, making that choice would have been an act of love - sparing his son from the suffering that he expected would be Jeffrey's fate. But in part the choice would have reflected his own suffering at the loss of a son with mobility. For that reason. "killing" wfelt to him like the right word.

The crucial help Galli received was from a physician whose name he does not give and who was not part of Jeffrey's ongoing treatment. The physician conveyed that the life vs. death decision didn't have to be made now. If Jeffrey decided in the future that life in a wheelchair with no use of arms or legs and no ability to breath on his own was not worth living, he could have the ventilator withdrawn. Galli concluded that letting the treatment proceed was not committing his son to a life of unwanted suffering.

The book is painful to read, but once I picked it up I couldn't put it down.

(Jeffrey completed high school and then college. For an article about him at the University of Rhode Island, see here. For a video of Jeffrey and his younger sister Sarah in 2012, 14 years after the accident, see here. And for a post I wrote about an adult patient with quadriplegia who elected to have his ventilator turned off, see here.)

Ignoring Families Can be Fatal

Yesterday in Heathrow Airport on my way home from Singapore I wrote a post about how US medical ethics ignores families and overemphasizes individual "autonomy." When I got home I read a painful story in the New York Times that confirmed the potential harm from the way ethics and law lead clinicians to treat individuals as isolated units: "Drowned in a Stream of Prescriptions: Addict's Parents Couldn't Halt Flow of Attention Deficit Drug.

Richard Fee, an intelligent, popular student who hoped to go to medical school, became addicted to stimulants in college. He faked symptoms of ADHD and received increasing doses of stimulants over a two year period. He ultimately became psychotic, and when the stimulants were stopped, became depressed (not unusual during stimulant withdrawal) and hung himself. The central points of the story are (1) how psychiatry has degenerated into brief "med checks" in which prescriptions are written without adequate thought about what's really going on and (2) how the pharmaceutical industry has succeeded in pushing medication use way beyond what good health and good practice call for.

But having just come from a conference on  "The Ethics of Family Involvement in Healthcare," I was transfixed by what happened when Richard's father, who was terrified about his son's deterioration, and who understood the addiction problem, tried to talk with Richard's psychiatrist: 

In late December, Mr. Fee drove to Dominion Psychiatric and asked to see Dr. Ellison, who explained that federal privacy laws forbade any discussion of an adult patient, even with the patient’s father. Mr. Fee said he had tried unsuccessfully to detail Richard’s bizarre behavior, assuming that Richard had not shared such details with his doctor.


“I can’t talk to you,” Mr. Fee recalled Dr. Ellison telling him. “I did this one time with another family, sat down and talked with them, and I ended up getting sued. I can’t talk with you unless your son comes with you.”

Mr. Fee said he had turned to leave but distinctly recalls warning Dr. Ellison, “You keep giving Adderall to my son, you’re going to kill him.”

I heard about situations like this again and again during my years of psychiatric practice. Whereas in Singapore respect for the family can lead to ignoring the patient, in the US respect for the individual can lead to grotesque stonewalling of the family. Dr. Ellison was not wrong that privacy laws emphasize the individual's right to privacy and to control access to information about him, but skillful clinicians learn how to (a) recognize the law but (b) do what's right for the patient. Law precluded Dr. Ellison from giving information to Richard's father, but it did not preclude listening to his father, explaining why he would not give out information without Richard's permission, thanking the father for his concern, and creating an opportunity for further connection.

Years ago I had a patient who (a) was in a suicidal crisis, (b) hated the hospital and had not benefitted from previous admissions, and (c) had responsible, caring friends who (d) were able to provide support and (e) would want to do so. My patient and I had a version of the following dialogue:

Patient: I won't go to the hospital!
Me: I don't want you in the hospital, but we have to keep you safe, and we'll need help from XYZ.
Patient: You can't talk with them.
Me: Since I know how much you hate the hospital and believe we can get you better without it, I'm going to talk with XYZ, but I want to do it with your permission.
Patient: You can't talk with XYZ - what about privacy and my rights?
Me: Your most important right is to be alive until  your time comes. I'd like to have your permission to talk with XYZ, but I'm going to do it one way or the other...

My  patient ultimately grudging agreed, XYZ came to the office, and we got through the crisis. But I'd meant what I'd said - if my patient had not given me permission I would have contacted XYZ. It made no sense for law to give me the power to impose involuntary hospital commitment but to forbid me from getting help from caring and competent friends without permission.

As Dr. Johnson taught us, the law can be an ass. US laws surrounding informational privacy are well-intended, but they're too simple-minded to apply to all human situations. Richard Fee might be alive if the medical establishment had not treated him as an isolated atom suffering from a deficiency of stimulant medication.

Western Bioethics Ignores the Family

At the end of my stay in Singapore I participated in a conference on "The Ethics of Family Involvement in Healthcare," sponsored by an international research consortium I'd not encountered before but whose mission I was totally in sync with:

Despite many attempts to broaden its ethical gaze beyond the patient-centered focus of traditional medical ethics, bioethics remains strongly individualistic. The patient is treated as a self-interested individual unencumbered by personal relationships, and the principle of self-determination is dominant. However, many areas of biomedicine call for a more relational perspective. This international collaborative project on family ethics is about just that.

In my clinical work I've been very attentive to the family context of my patients, but in my work on ethics it's the neglect of the individual's responsibilities as part of a society that I've attended to. I've argued ad infinitum that medical ethics - especially in the US - has attended too exclusively to the needs and interests of the "numerator" (the individual) without attending to the needs and interests of the "denominator" (the society the individual is part of). In the US that focus has led to wildly excessive health expenditures and neglect of public health and other social goods.

In 1989, during my first visit to India, I visited the psychiatry department at Banaras Hindu University. A resident who was Indian by birth but who'd lived in the US through his teen age years and seemed very American was showing me around. On a hospital ward I saw an older woman combing the hair of young adult patient. I asked about what I interpreted as remarkable nursing care. The resident explained that this was her mother, and that patients were accompanied in the hospital by family members. I then asked a very American question - weren't the patients worried about privacy and confidentiality? The resident, despite having grown up in the US, simply didn't understand my question. He explained that their worry was about not being extruded from the family.

My question showed that I'd been more influenced  than I'd realized by the tendency in US psychiatry to blame the family for the patient's problems. When I trained as a resident (1965 - 1968) and did a fellowship at the Family Studies Unit at the National Institute of Health (1968 - 1970), the concept of the "schizophrenogenic mother" was still widely accepted. When I was responsible for a hospital unit at the Massachusetts Mental Health Center (1970 - 1973), I was concerned that many staff members had a hostile view towards families, and often made them feel unwelcome, and I did teaching sessions about the important role of families as caretakers. But at Banaras Hindu University my reaction focused on fear of not having privacy, not fear losing family ties.

I believe the tendency of US medical ethics to see the individual as an atom of self-interest and threatened rights comes from two main sources - (a) the anti-family tilt of American culture in the last half of the 20th century and (b) an effort to give the patient more authority and power in the patient/physician relationship. This latter aim has led to a beneficial and overdue rebalancing of the interaction between patient and physician elegantly conceptualized in the concept of "shared decision making," but US medical ethics needs to incorporate more recognition of the role of "families of origin" and "families of choice" in the ethical equation.

There's no way to make clinical ethics tidy. Sometimes families are intrusive, hurtful, and even profoundly destructive. Somtimes they are nurturing and crucial for an individual's well being. And, as most of us have experienced, family involvement is typically a blend of delight and exasperation. Sorting out the situation is what makes the health professions so challenging, so important, and so much fun!