Friday, September 2, 2016

Drug-Resistant TB and a Physician Hero in India

Today's New York Times described Dr. Zarir Udwadia's campaign against drug-resistant TB. He is earning well-deserved international respect.

Dr. Udwadia is a pulmonologist in Mumbai. He did his medical training in Mumbai and Scotland. When he returned to Mumbai in 1991 he followed his pulmonologist father in starting a private practice. But he wasn't busy enough, and to use his knowledge he started a free clinic for patients with TB. It's now the busiest clinic at his hospital.

In 2011 Dr. Udwadia published a letter describing four patients whose TB infection was resistant to all antibiotics currently available in India. The Indian government's initial response was to attack the messenger, not to respond to the message. But Dr. Udwadia refused to be silenced, and brought the government to recognizing and responding to the medical crisis. The government now pays for drugs that were not subsidized in 2011.

I'm currently teaching medical students who are going into their first clinical rotations, and we've been talking about the patient-physician relationship. From that perspective I was especially moved by this passage:
The tall, lean doctor with a halo of black hair refuses to wear a mask to protect himself, even though his wife says he does worry about contracting TB. “How can you connect to a patient that way?” he asks. Instead, he leaves open his window so there is good air circulation, which reduces the chances of infection.
In the jargon of ethics, his actions are "supererogatory" - morally admirable but above and beyond what is reasonable to expect. If I were advising Dr. Udwadia, I would encourage him to protect himself to ensure that he continues to be available for his ministry to the poor. But his commitment to making a real human connection with his patients is in the best tradition of medicine and the spirit of Mahatma Gandhi.

Here are the closing paragraphs from the article:

When Mrs. Sheikh, a tiny woman wearing a salwar kameez, showed up for her recent checkup, Dr. Udwadia grinned and reached across the table to shake her hand, unable to contain his excitement as he reviewed her tests. They were negative for TB for the third successive year.
Her lungs are so scarred from the disease that she becomes breathless after walking several steps, but she says she is grateful to be alive. She takes a two-day train ride from her hometown in northern India to Mumbai every six months for a checkup.
“I know it sounds like a cliché, but these times are what I live for,” he says. “In India, all patients tell the doctor, ‘You saved my life,’ but with Rahima Sheikh, I know it’s really true.”
 When I see the brilliant, idealistic young medical students next week, I'll hope to convey some of the values that Dr. Udwadiah evinces so powerfully!

Wednesday, August 3, 2016

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.

Saturday, July 30, 2016

Close Reading, Improved Writing, and Service Learning: A Virtuous Circle!

I'm in Vermont at the Bread Loaf School of English, a Middlebury College program in which the students, primarily high school and middle school English teachers, can get a Master's degree in the course of five summers. My wife has been teaching here every summer since 1992 and I enjoy the potential for (a) telecommuting and (b) swimming and hiking in Vermont.

In the past four years I've been doing an annual workshop on "Making Ethics part of High School and Middle School English Class." Working with the students here is a great pleasure and privilege. There's very little that's more important than educating the next generation.The teachers are doing God's work!

There were 18 participants in the workshop I did a week ago, plus three members of the Bread Loaf faculty. The participants taught in settings ranging from the Navajo Nation to public schools in urban and rural settings to elite independent schools.

We focused the workshop around a question that came from a 10th grade teacher, whose class does a service learning module that combines class discussion, a service project chosen by the student, and a research paper. She felt that the unit was well-intentioned, but many students experienced it as a burden, and it didn’t feel integrated with the rest of the semester’s work. She asked the group – did other teachers have ideas about how to make service learning more engaging for students? 

I’ve distilled 4 points from the wonderfully rich discussion:

1. English class is often asked to be the vehicle for humanistic goals in the school curriculum. Ideally, moral development and heightened humanism would be a goal for every component of the school  – inside and outside of class. But this kind of full court press rarely happens, and English teachers are asked to take the lead. Being looked to for leadership in moral development is a challenge and an opportunity! I mentioned to the group that my medical specialty – psychiatry – is in a similar situation. We’re often asked to be responsible for the “understanding the patient’s point of view” component of the medical school curriculum. ..”

2. Several participants suggested that preparatory exercises can help students become more open to and engaged with reflection about values. A participant reported that hypothetical questions like “A lifeboat has 10 people but will sink from too much weight. Everyone will drown unless someone is thrown off. What should be done?” triggers lively discussion. Another participant described how she gives the class statements dealing with issues that come up in a book they are reading. Then she has them do “speed dating” – i.e., talking for 30 seconds with another student about their reactions to the statement. Another participant described how she did a similar exercise before reading Hamlet. She poses questions like “do you believe in ghosts?” or “if someone kills your father, should you kill that person for revenge” and asked students to stand up if they agreed. These teachers reported that like warming up before physical exercise, activities of this kind can help students “warm up” into a more reflective state of mind in which they are prepared to see ethics as something important to their lives.

3. When schools require service learning, unless students are prepared well they can cause harm when they enter into the space of those they are “serving.” And the very idea of doing “service for those in need” can create a noblesse oblige attitude (“the poor can’t help themselves – they need me to do this service for them…”) or cynicism (“this is just resumé padding…”). Some argued that requiring service learning and giving academic credit for it is corrupting. But others who agreed that these risks are real nevertheless felt that some students who would never get involved on their own might be turned on and transformed by the service learning experience.

4. Independent schools and public schools in wealthy communities are increasingly sponsoring “voluntourism” – programs in which students go for a short time to a poorer country to do “service.” With rigorous preparation, a strong relationship with local community partners, and opportunity to reflect on the experience, these programs can be excellent learning opportunities for the students and even if not helpful at the “service” site, at least not harmful. A participant contrasted “asset based community development” to “voluntourism charity work”.” ABCD involves identifying the strengths in a community and helping the strengths to be extended. Another participant questioned why “voluntourism” programs travel to other countries when there are valuable opportunities to contribute in their own or nearby communities.  With regard to the stance of noblesse oblige” I mentioned a favorite quote from Thoreau: “If I knew for a certainty that a man was coming to my house with the conscious design of doing me good, I should run for my life!”

The core idea that has emerged from the workshops is an understanding of a virtuous circle involving literature, writing, and social action, which I've represented in a diagram:

Close reading strengthens empathy and humanism by entering into the worlds that literature creates, and improved writing does the same by asking students to think about the audience they are speaking to and how they can best reach that audience. Understanding our values and biases and empathizing with perspectives of others even if we disagree with them increases “ethical sensitivity.” And when students identify values important to themselves and for their communities, they are primed for ethical activism on behalf of these commitments. Activism can create a virtuous circle by stimulating further learning opportunities that strengthen engagement with literature and writing. 

I hope the high school and middle school teachers learned as much as I did from the workshop!

Wednesday, July 6, 2016

Is this doctor hitting on his patient?

I recently received a very thoughtful email from a reader. I'm posting it here (slightly edited) with permission from the writer:
I recently stumbled across your very helpful and insightful blog. I had a question that I thought you might be able to help me with. I was wondering if you could possibly cover something on appropriate boundaries in the doctor/patient relationship.I have seen a few pieces on obvious violations of this (romantic and/or sexual relationships where the doctor clearly took advantage of a patient), but I was more curious about the grayer areas, where doctors may be a bit too familiar with their patients.
I ask because I saw a male OB throughout a recent pregnancy. He was quite attentive, very competent, and overall a wonderful doctor. However, sometimes he made comments that took me off guard and I was never quite sure how they were relevant to my medical care. For example, he asked if my husband still got erections and later asked me to describe how I felt when I had an orgasm. On one hand, I could see how questions regarding sexual activity during pregnancy are pertinent, but never before has an OB asked me these questions during a pregnancy. The questions seemed a little odd to me, but I also wonder if perhaps this OB is just much more thorough in his care than my previous one.
I'd appreciate any light you could shed on the matter of grayer areas in the doctor/patient relationship.
What a terrific - and important - question! Here's my reply:

As you say, the questions your obstetrician asked could be relevant to your obstetrical care, but they could also be part of an effort to see if you might be sexually/romantically available. As a general rule of thumb, when the medical relevance of questions physicians ask isn't obvious, we should explain why we are asking the questions. Not having done that, your obstetrician created a situation in which a reasonable patient might wonder "are these questions part of good medical care, or is the doctor 'coming on' to me?" 

I think the most we can say is that the obstetrician might have been committing what in medical ethics language would be called a "boundary violation." If that was his intent, it was clearly a breach of professional ethics. But if it was not his intent, he failed to make clear why the questions were relevant. For example, he might have said "In my experience, it's not uncommon for couples to encounter difficulties with sexual intimacy during pregnancy...." But it's still unclear what the relevance of your experience of orgasm would be to medical care, unless you had brought up a concern of your own, or if he had said something like "I'm trying to learn about sexual relationships during pregnancy, so if it's OK with you I'd like to ask you..."

Ideally, patients will ask for clarification when they're uncertain about what we are asking about or doing. But in my practice there were times when I thought I was being clear but learned that I had inadvertently confused my patient. The power imbalance in the medical relationship means that physicians can't rely on patients to ensure clarity. Your email shows you to be a very clear thinker, but apparently you didn't feel comfortable saying something like "Could you explain how that question relates to my obstetrical care?"

If a resident or colleague asked me if it was OK to inquire about a partner's erections or the experience of orgasm in the course of obstetrical care, I would (1) ask about the relevance of the questions to the patient's care and, if there was clear relevance (2) recommend that the physician explain why he was asking the questions, to avoid generating the kind of concerns you experienced.

So, in  answer to the question of whether your physician was committing a boundary violation, my response is that it's possible that he was. We know from patient reports that sexual exploitation is often preceded by suggestive/ambiguous comments that in retrospect appear to be "testing the waters" or "dropping hints." But it's also possible that the questions were entirely relevant to his objectives for your care. If that's the case, he was "guilty" of poor clinical communication.

Thank you again for your very valuable question! 


Tuesday, June 28, 2016

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.)

Thursday, June 23, 2016

When is Rationing Ethically Accptable?

If I prefer a medicine that produces fewer side effects or marginally better outcomes, how much should you be expected to pay for my preference?

That's a question we in the US run away from. We'd rather say - "rationing is unethical! Period."

In truth, rationing happens all the time. The trend towards requiring us to pay a larger portion of our health care expenses out of pocket aims at making us responsible for our own rationing choices. If my physician recommends a CT scan "so we can be sure..." and I decide it's not worth the cost to me - that's self-imposed rationing. In our personal lives we make rationing decisions based on informal cost-effectiveness decisions every day.

But at the level of policy, acknowledging the need for ethically-grounded rationing is a third rail.

That's why the publication of Cost-Effectiveness of Long-Acting Injectable Paliperidone Palmitate Versus Haloperidol Decanoate in Maintenance Treatment of Schizophrenia is so important. for my field - psychiatry. In addition to providing valuable clinical information, the authors are admirably honest in presenting the rationale for potential rationing decisions.

Here's what the article is about:

Some patients with schizophrenia who benefit from antipsychotic medications follow their regimen reliably. But some don't, and for them a long-acting injectable antipsychotic medication can literally be a life-saver. I remember well a patient of mine who wouldn't take pills and wasn't keen on seeing a "shrink," but who accepted a monthly injection of haldol from his primary care physician. I made a serious joke with my colleague - "I may accomplish some useful things, but you are 'curing' schizophrenia in five minute appointments!" My patient and his family were enormously grateful that he functioned better and was happier than he'd been for a decade.

Paliperidone palmitate is still on patent and theoretically had some advantages over haldol decanoate, a much less costly generic medication. In a well-controlled randomized comparative effectiveness study, the authors compared the two medications, quantifying the differences between them in terms of quality adjusted life years (QALYs). Paliperidone had a slight advantage in terms of side effects, but at a cost of $500,000 per QALY, well-above what virtually every explicit discussion of QALYs has seen as an acceptable cost. Here's part of the author's conclusions:
The results of this study should encourage consideration of older, less expensive drugs, such as HD. Used at moderate dosages in this study, HD’s overall effectiveness and tolerability were only slightly worse...than those of PP, and it had clear advantages in cost-effectiveness...A rational policy for treatment of chronic schizophrenia might limit use of the more expensive [PP] to patients who do not benefit from or cannot tolerate HD. 
My colleague and friend Norman Daniels and I have written extensively about the overall ethics of rationing. I'm proud of the work we've done and believe it's useful. But progress in coming to grips with the need to ration care in a clinically grounded, ethically admirable manner will have to be done specialty by specialty in medicine, in concert with concerned members of the public.

The comparative effectiveness study of paliperidone and haldol illustrates four crucial steps that need to be taken for us as a nation to learn to set limits fairly:
  1. Develop clinically and humanly meaningful evidence about key treatment choices.
  2. Acknowledge the findings in an explicit, east to understand manner.
  3. Do economic analysis to define the costs involved with the choice.
  4. Decide whether the differences between the choices are worth the costs entailed.

The fifth and most difficult step is making use of these findings in the real world. In a health system based on competing health plans, health plan A would be reluctant to apply findings like these in its policies before health plan B does the same. If they did, word on the street would be "health plan A RATIONS CARE! How can we tolerate money grubbers like that in our health system?"

Learning to set limits fairly is more of a challenge to the heart than the head. At an intellectual level it's easy to see that limits are necessary. But thus far in the US, health system leaders, health care organizations, and the public have preferred to act as if rationing is evil and can be avoided.

That may have been true in the Garden of Eden. But, alas, that paradise vanished long ago.

Monday, May 30, 2016

Meditation and Medical Ethics

Medical ethics and mindfulness have a lot in common. I reached that conclusion after a recent conversation with my long-time friend Charlie Halpern about his effort to introduce mindfulness into legal education.

Charlie has been doing this at the UC Berkeley School of Law for the past several years through classes and elective retreats. He's an enthusiast and a believer. He feels, and many legal educators and law schools agree with him, that mindfulness practice increases empathy, compassion, and the ability to really hear what clients and others involved in negotiation and litigation are saying. He described how a professor at Berkely has taken to starting his classes with three minutes of silence. The professor reports that "sacrificing" three minutes of class time leads to a richer, more thoughtful class experience.

I've taught meditation to patients in a medical setting and have recommended meditation to many of my patients over the years. And I've written in this blog about how mindfulness practice can be woven into busy practitioners' lives. (See here and here.) But until the conversation I had with Charlie, I hadn't recognized the obvious connection between mindfulness and the way I've taught medical ethics.

In the semester-long course medical ethics course that I taught at Harvard Medical School, in addition to the topics that formed the intellectual content of the course, I encouraged the students to hone their skill at (a) observing their cognitive and emotional reactions to clinical situations that raise ethical issues, (b) treating these reactions as "data," not "truths," and then (c) reflecting on the "data" presented by their experience as one piece of ethical analysis before (d) reaching a conclusion. Over time, as demonstrated by clinicians who we regard as models of ethical action, this set of actions can become reflexive, done automatically and recurrently.

What I realized is that steps (a) and (b) are close cousins to what meditation teachers encourage their students to do. The setting is different - deliberate quiet and inwardness in meditation versus to what I'm inclined to call "meditation in action" in learning to be an ethically sensitive clinician. But the outcomes the teacher hopes for in the student - empathic connection with others, compassion, and seeing the truths that underlie complexity - are the same.

Recognizing the kinship between mindfulness and medical ethics is a valuable insight for ethics educators. An increasing number of students know something about meditation and respect the practice. Recognizing that skill at meditation can enhance their grasp of medical ethics, and, that skill at medical ethics fosters some of the key skills for meditation, enhances both domains.