"By Blood" by Ellen Ullman

I've just finished reading a remarkable novel: By Blood by Ellen Ullman.

I'd read in a review that the story is told by a disgraced professor who eavesdrops on a psychotherapy occurring in the adjacent office. How could I, after years of psychiatric practice, resist a story like that!

The professor/narrator, whose name we never learn, and whose sordid doings at the university he's been forced to leave we only get hints about, is immediately obsessed with the young lesbian, adopted patient and her German born therapist. To the narrator, being adopted means being free from blood ties to one's past. Since his ancestry is replete with suicides, the image of escape is appealing. But once the person he refers to as his "dear patient" begins to search for her birth mother, he becomes a detective, and ferrets out clues that he passes on to her, in the guise of the agency that handled her adoption. The complex story leads from San Francisco to Bergen-Belsen and Israel. I won't spoil the reading experience by giving too many details.

For me Ullman's novel created an experience that was common in clinical practice and, more broadly, life: a feeling that behind a surface that initially seems bland there's a fascinating, illuminating story to be found.

When Elvin Semrad, the training director in my residency was asked whether he didn't sometimes get bored with his patients, he said something like this:

No human being is boring. If we feel bored, one of two things is happening - either the patient is avoiding what's really bothering him, and the words are a cover, or the patient is talking about an issue that we haven't resolved for our self, and boredom is our defense.

Whenever I felt bored in clinical practice I applied Dr. Semrad's teaching - it always gave good guidance.

By Blood is about curiosity, and I'll bet that if you start it you'll find that it evokes such strong curiosity you won't be able to put it down. "Curiosity" is title of a 1999 essay in the Annals of Internal Medicine by Dr. Faith Fitzgerald that I admire and have often used in teaching. Dr. Fitzgerald was offended when patients were described as "uninteresting," and challenged the resident leading the team she was making rounds with to choose the least interesting patient on the ward:

He chose an old woman admitted out of compassion because she had been evicted from her apartment and had nowhere else to go. She had no real medical history but was simply suffering from the depredations of antiquity and abandonment. I led the protesting group of house staff to her bedside. She was monosyllabic in her responses and gave a history of no substantive content. Nothing, it seemed, had ever really happened to her. She had lived a singularly unexciting life as a hotel maid. She could not even (or would not) tell stories of famous people caught in her hotel in awkward situations. I was getting desperate; it did seem that this woman was truly uninteresting. Finally, I asked her how long she had lived in San Francisco.

“Years and years,” she said.

Was she here for the earthquake?

No, she came after.

Where did she come from?

Ireland.

When did she come?

1912.

Had she ever been to a hospital before?

Once.

How did that happen?

Well, she had broken her arm.

How had she broken her arm?

A trunk fell on it.

A trunk?

Yes.

What kind of trunk?

A steamer trunk.

How did that happen?

The boat lurched.

The boat?

The boat that was carrying her to America.

Why did the boat lurch?

It hit the iceberg.

Oh! What was the name of the boat?

The Titanic.

She had been a steerage passenger on the Titanic when it hit the iceberg. She was injured, made it to the lifeboats, and was taken to a clinic on landing, where her broken arm was set. She now was no longer boring and immediately became an object of immense interest to the local newspapers and television stations—and the house staff.

I'm writing about By Blood in an ethics blog because I believe the right kind of curiosity about our fellow human beings is the royal road to good ethics. Fancy words used in ethics teaching - "autonomy," "informed consent," "beneficence" and more - provide useful frameworks, but they don't provide the vivid human truth that empathic curiosity points us to.

(An excellent interview with the author can be found here. And an excellent review from the New Republic is here.)

Returning to Practice After Loss of License

Two years ago I wrote about Dr. Brian Kwetkowski, a primary care physician in Rhode Island, who lost his license for having a sexual relationship with a patient. According to the Rhode Island Board of Medical Licensure and Discipline, Dr. Kwetkowski is a 1996 graduate of the New England College of Osteopathy, and is Board Certified in Family Medicine. The Board reported that three years prior to his voluntary surrender of his license, Dr. Kwetkowski commenced a sexual relationship with a 19 year old female patient.

The Board required Dr. Kwetkowski to "enter a treatment facility and complete all of the recommendations of the evaluators." Dr. Kwetkowski did this at the Acumen Institute, in Lawrence, Kansas. The clinical staff has impressive credentials. All had formerly been associated with the Meninger Clinic until the Clinic moved from Kansas to Texas in 2003. Here's how Acumen describes its program:

Embedded within all aspects of our individual and group treatment, education, and coaching processes is an emphasis on the components of professionalism, maintaining appropriate role functions, and high-achievement. We endeavor to help our clients to develop the insight and the skills they need to resolve work-related and personal difficulties and fashion life plans that foster integrity, authenticity, and physical and psychological well-being. Within an intensive day treatment/coaching process, our staff helps each physician to:


•Identify deficits in professionalism

•Recognize personal development needs and goals and develop an adaptive way to have those needs met

•Identify and adjust personality attributes that have led to self-defeating outcomes

•Monitor response to medication, if indicated

•Internalize new leadership and personal life skills sets

•Implement new skills that promote a team-based work environment

•Develop a leadership plan tailored to the client's particular strengths and career context

These are the right goals for physicians a licensure board sees as potentially capable of rehabilitation and return to practice.

I learned today from a reader's comment that on March 8, 2011, the Rhode Island Board of Medical Licensure and Discipline reinstated Dr. Kwetkowski's license. He must be monitored by the Rhode Island Physicians Health Committee for five years, continue in weekly psychotherapy, practice only in a group setting, be chaperoned with all female patients, and had to return to the Acumen Institute three times in 2011 for followup assessment, which included polygraph testing "to document the absence of boundary violations."

Many of Dr. Kwetkowski's former patients responded to my original post and described him as an outstanding physician. I assume from the Board's actions that his track record apart from the serious boundary violation must have been good, and that the violation was not part of a pattern carried out with other patients. I further assume that the Board believed that it was safe to allow him to return to practice under the specified conditions. If Dr. Kwetkowski continues to care for patients in the exemplary way former patients described and respects proper boundaries for the remainder of his career, the Board's decision will have been correct.

The Ethics of Choosing Wisely and Practicing Efficiently

This month the American Board of Internal Medicine Foundation (ABIM) joined with nine medical specialty societies, each of which released a list of five tests, procedures or treatments whose use and clinical value were not supported by evidence, as determined by experts from the specialty.

This is a major step for the US health system. We've been phobic about engaging seriously with waste. In the 1990s we asked insurers to do the job, but physicians and patients pushed back against "managed care," and insurers backed off. Now we physicians ourselves are stepping forward. It's about time!

Among the 45 recommendations, the ones that are "absolute" should be relatively easy to discuss with patients, as in this example from cardiology:

Don’t obtain screening exercise electrocardiogram testing in individuals who are asymptomatic and at low risk for coronary heart disease. In asymptomatic individuals at low risk for coronary heart disease (10-year risk <10%) screening for coronary heart disease with exercise electrocardiography does not improve patient outcomes.

There's no waffling here - this form of screening "does not improve patient outcomes." If I were a cardiologist I would say that asking Medicare, Medicaid, or a private insurer to pay for the screening would be unethical. If it is known not to improve outcomes there's no justification for using shared health care funds to pay for it. And I'd feel fully comfortable looking my patient in the eye and explaining why I would not order the test.

The same is true for this "absolute" recommendation:

Don’t obtain imaging studies in patients with non-specific low back pain.
In patients with back pain that cannot be attributed to a specific disease or spinal abnormality following a history and physical examination (e.g., non-specific low back pain), imaging with plain radiography, computed tomography (CT) scan, or magnetic resonance imaging (MRI) does not improve patient outcomes.

But some of the recommendations are "relative," not "absolute," as in these two examples:

Don’t obtain preoperative chest radiography in the absence of a clinical suspicion for intrathoracic pathology.
In the absence of cardiopulmonary symptoms, preoperative chest radiography rarely provides any meaningful changes in management or improved patient outcomes.

Don’t use cancer-directed therapy for solid tumor patients with the following characteristics: (a) low performance status (3 or 4), no benefit from prior evidence-based interventions, not (b) eligible for a clinical trial, and no strong evidence supporting the clinical value of further anticancer treatment.
Studies show that cancer directed treatments are likely to be ineffective for solid tumor patients who meet the above stated criteria...

Suppose a patient with a solid tumor that meets the specified criteria protested - "I understand that further chemotherapy is unlikely to be effective, but I want to try anything with the slightest chance of helping me. Your medical society is recommending rationing! That's not fair!"

The oncologist won't have an easy time responding. The patient is right - the medical society has made a rationing recommendation. In my view, this is a long overdo step forward out of the lala land of make believe infinite resources. But in our political culture, the word "rationing" is avoided as assiduously as the "f" word. Our reflex is to deny that rationing is occurring, not to discuss the rationale for why and how it is being done.

And with regard to the recommendation against a routine chest X-ray, it's only a matter of time until the evening news features a patient whose X-ray picked up an undiagnosed cancer, leading to cancellation of the scheduled surgery and removal of the cancer. The patient will tell us "the X-ray saved my life - are we going to let a rationing decision kill people just to save money?"

I hope the ABIM and the specialty societies are brave enough not to run for cover when the inevitable backlash occurs. They've taken a courageous step on behalf of the health of patients who could be harmed by interventions that wise clinical practice should avoid. And they've pushed us towards open engagement with the question of when interventions that "rarely" produce any benefit should be paid for our of shared insurance funds. We should thank the ABIM and the specialty societies for their contribution to healthier patients and a healthier society!

(Information about the ABIM's "Choosing Wisely" program can be found here.)

Making Doctors more Ethical

The Association of American Medical Colleges (AAMC) has redesigned its Medical College Admission Test (MCAT) for the first time since 1991. For premeds, the MCAT is like the pearly gates - they have to pass through it to get to the promised land of medical school. It's more than 50 years since I took the MCAT, but as I wrote this paragraph I felt my pulse going up. Our innards don't forget major stressors from the past!

Starting in 2015, the MCAT will add a section on psychology and sociology and another on critical analysis, to the sections on the hard sciences and mathematics. The AAMC wants to send the message to premeds and colleges that medicine requires more than mastery of scientific knowledge. And they're right - taking good care of patients requires understanding the patient's psychology and social context, application of critical analysis to diagnosis and treatment planning, and the interpersonal skills for developing trusting relationships.

The MCAT section on psychology and sociology will be organized around five basic truths about human nature and society that the designers of the test call "foundational concepts":

• Biological, psychological, and socio-cultural factors influence the ways that individuals perceive, think about, and react to the world.
• Biological, psychological, and socio-cultural factors influence behavior and behavior change
• Psychological, socio-cultural, and biological factors influence the way we think about ourselves and others.
• Cultural and social differences influence well-being.
Social stratification and access to resources influence well-being.

The draft version of the new MCAT probes these basic truths with challenging questions. Some of them were tough to answer. I didn't get a perfect score.

At a welcoming event for first year Harvard Medical students in 1960, a distinguished scientist on the faculty asked me what I'd majored in at college. I told him - a combined major in philosophy and psychology. He responded - "philosophy and psychology - what are you doing in medical school?" 

The AAMC doesn't want that kind of "greeting" to happen in the future.

The AAMC is entirely right to extend the scope of what the MCAT examines. The new standards, however, are just a drop in the bucket for changing the culture of medicine. Doing well in psychology and sociology courses won't be hard for smart undergraduates. Course work matters,  but character can be refractory to book learning.

In a freshman philosophy course in college, the instructor asked "how many of you can refute Plato's argument for XYZ?" None of us raised our hand. "So am I right that you have all decided to change your lives in accord with XYZ?" Again, none of us raised our hand.

His point - the dissociation between what was on the page and what was in our hearts, was clear. In a similar vein, in the anatomy lab during my first year of medical school the instructor came to my table and asked our group about the course and branches of the femoral nerve (the major nerve going to the leg). Studious book learners that we were, we looked at the ceiling and tried to recall what we'd read in the anatomy text. The instructor suggested - "wouldn't it be better to look at the dissection you've just done?"

What premeds learn in social science courses is important, but what they learn from personal relationships, their jobs, teams, and volunteer activities has a deeper influence. I love leading a section of the first year Harvard Medical "Professionalism and Medical Ethics" course, but I think of it as trying to impart a framework that - with good luck and good mentoring - the students will be able to apply in their future clinical work. Albert Schweitzer taught that "Example is not the main thing in influencing others. It is the only thing." The example of what the AAMC is saying in its redesign of the MCAT is probably as important as what future students will learn in Psychology and Sociology 101!

Anne Sexton's Therapy Tapes

After arguing in a recent post that poet Anne Sexton's therapist did the right thing in releasing tapes of her therapy to Diane Middlebrook, Sexton's biographer, I read Middlebrook's biography itself. (It's a "good read," especially for anyone interested in the 1960s poetry scene.) I'm surprised that the biography didn't persuade all those who lambasted Dr. Martin Orne back in 1991 that he'd acted in accord with the guidance Sexton, who died of suicide on October 4, 1974, would almost certainly have given him.

Middlebrook describes how often people with mental health problems wrote to Sexton about how much her poetry meant to them. Sexton responded to every letter in a concerned, supportive manner. When she met she met with the young poet C.K. Williams, he was "surprised by how much she would talk about her therapy when our relationship was not very intimate. But  then, it wasn't a very intimate subject to her."

Sexton was fascinated by Williams's experience teaching a poetry workshop for psychiatric patients in Philadelphia.  In 1968-1969, she picked up on his idea and offered a weekly poetry workshop for patients at McLean Hospital. She worked hard at it. When a member of the workshop complained that Sexton was not being critical enough, Sexton responded:

"You are right. I don't like to discourage anyone at McLean. I feel that everyone has something to say and will perhaps, in time, have more important things to say. Poetry led me by the hand out of madness. I am hoping I can show others that route."

The strongest reason I could see for not releasing the tapes to Middlebrook is the fact that Sexton's niece and mother-in-law opposed it, feeling that revelation of the details of her desperate moods and compulsive sexuality was disturbing. They're right. It was a very disturbing life. But neither was in the role of executor - that was Sexton's older daughter Linda. And there's no reason to think that Sexton's self disclosure was intended to cause pain to those who were close to her.

Anne Sexton died in 1974. Martin Orne, who released the tapes, died in 2000. But the question of whether he did the right thing lives on. Having read the biography, I continue to believe that Orne was doing what his former patient would have wanted him to do.

University of Wisconsin Physicians Disciplined

The Milwaukee Journal Sentinel reported yesterday that the University of Wisconsin School of Medicine and Public Health disciplined 20 physicians, including 11 faculty members, for handing out sick notes at demonstrations against Governor Scott Walker's union-busting legislation last year.

Here's what I wrote about the situation last March:

I supported the protests, and if I'd been a physician in Wisconsin I would have joined protesters at the capital, but I would not have given out doctor's notes. During the Vietnam era psychiatrists were not infrequently asked by draft age men to provide medical testimony that they suffered from a psychiatric illness that would make them undraftable. Colloquially this was called "copping out on a nut."

I opposed the war and frequently participated in marches and rallies against it, but I didn't write cop-out-on-a-nut letters. Physicians are given a special status in society through licensure, laws that create a framework for practice, and social respect that abets healing potential. I regarded truthfulness in medical testimony as one of the underpinnings for the profession's ability to function. Truthfulness was part of our implicit contract with society. As a citizen it was my duty to advocate in accord with my political beliefs and values. As a physician it was my duty not to use the privileges society gives the profession deceitfully.

Dr. Norm Fost, a distinguished pediatrician and ethicist, headed the University committee that investigated the incident. The committee concluded that the physicians had acted dishonestly. Fost was troubled that "virtually none of those involved acknowledge that they did anything wrong." Paul DeLuca, the University Provost, who rejected an appeal by one of the physicians, said the physician had "embarrassed [the University] by not showing any kind of respect for the integrity of the doctor/patient relationship."

11 faculty members were fined up to $4,000. Some were required to give up their leadership roles for up to four months. 9 residents received letters of reprimand.
Apparently the physicians defended themselves with the explanation that the sick notes were for demonstrators who were suffering from stress. This isn't clinically plausible. If I'm too "stressed out" to go to work I don't belong at a political demonstration. I was reminded of what I was told as a child - if I was too sick to go to school, I wasn't well enough to go to the movies!

When I wrote about the sick notes last year I was concerned that "in the overheated political atmosphere in Wisconsin the note-writing physicians could be at risk for severe penalties." I think the actual penalties were fair, but the risk of being fired or losing medical licensure was real -- State Senator Glenn Grothman, whose conservative credentials are impressive, was disappointed in the penalties - he'd been "hoping for something much stiffer."

We physicians, and the society we're expected to serve, should be vigilant about insulating medical practice from politics. That applies to the causes we believe in as well as to those we oppose. "Pro life" legislation that directs physicians to force patients who are seeking legal abortions to undergo unnecessary ultrasounds is wrong, quite apart from whether one is "pro life" or "pro choice." Likewise, writing work-excuse notes for demonstrators is wrong whether or not one agrees with the demonstrators. 

Euthanasia and suicide

On March 29 Charles Snelling killed Adrienne, his wife of 61 years (the mode of her death has not been publicly revealed) and then shot himself. Both were 81.

Charles and Adrienne had an exceptionally loving marriage. He was a successful entrepreneur and inventor who ultimately went into public service. She cared for their five children and then became a fine arts photographer.

Six years ago Adrienne developed Alzheimer's disease. Charles cared for her at home, with 14 hours of help per day. When he travelled for his work he often took Adrienne with him. Charles spoke of their lives together as a love story.

On November 22, 2009, Adrienne wrote to her children:

As you know I have Alzheimer’s. It is not a nice disease. So far I have held up pretty well. Dad and I are still having a pretty good life. There is no doubt where my sickness will end up for me.

All of our lives, Dad and I have talked over our end of life beliefs. We are both in agreement that neither one of us wants to live after all reasonable hope for a good life is over. . . . We have had such a great life together and with all of you.

Several hundred readers commented on the New York Times obituary, creating a kind of Rorschach test of our attitudes about euthanasia, suicide, and the right to control the manner of our own death.

Some condemned Charles:

When people choose to take another person's life, regardless of circumstances, it is a deliberate execution. I say that as a hospice volunteer, a daughter of a fully demented mother with Alzheimer's, and a medically fragile 90-year old father. Life counts until the end.

Some focused on quality of life with Alzheimer's:

For those of you who'd rather be institutionalized than peacefully put out of your misery (given a complete loss of your personhood)--all I can say is that you've either not spent much time in institutions or you have a masochistic streak a mile wide.

For me, the quality of my life is far more meaningful than the quantity of it….

Some saw the murder/suicide as the right way for a loving life to end:

In my mind, this husband was brave, loving and strong. He gave his wife a beautiful gift by allowing her death with some dignity left; a death alongside the love of her life and a death that spared her the worst parts of the Alzheimer's "spiral".

And some withheld judgment:

This is one of those things that I don't think you can understand unless you're in it.

I agree with this last comment. The actual facts about the Snellings' health and ethical beliefs don't matter to those who believe (a) it's a sin against God to hasten death or (b) that individuals have complete liberty to choose their own path. For them there's an irrefutable "right" answer. They "know" whether the way Mr. and Mrs. Snelling's lives ended was right or wrong.

For others, facts matter. Adrienne Snelling's letter to her children certainly sounds as if she contemplated the possibility of suicide and euthanasia. If this was her consistent view, those who call her death an "execution" are doing an injustice to her husband, who was carrying out her wishes.

 But even if you're prepared to see what Charles did as an act of love, not an execution, did he do the right thing? In a New York Times op ed this morning, David Brooks says "no":

Either Snelling was so overcome that he lost control of his faculties, or he made a lamentable mistake. ..who is to say how Snelling would have felt four months from now? The fact is, we are all terrible at imagining how we will feel in the future. We exaggerate how much the future will be like the present. We underestimate the power of temperament to gradually pull us up from the lowest lows. And if our capacities for imagining the future are bad in normal times, they are horrible in moments of stress and suffering.


Given these weaknesses, it seems wrong to make a decision that will foreclose future thinking. It seems wrong to imagine that you have mastery over everything you will feel and believe. It’s better to respect the future, to remain humbly open to your own unfolding.

Brooks is making an important point. In my clinical practice I often spoke with people about the "logic" of their suicidal thinking, and I often argued that the ostensible "logic" was faulty. That's what Brooks is doing in his imagined posthumous conversation with Snelling. This would have been the right conversation for a family member, close friend, or primary care physician to have over time. But even if Mr. Snelling initially said, in effect, "you might be right," at a later time he may well have said "I've waited long enough, and the future you're imagining seems further and further away."

Two years before their deaths the Snellings sent a holiday card with a photograph of them walking together holding hands, with their backs to the camera. A friend interpreted the card as saying they were "going home." That's how I like to think about the end of their lives.

(In December, 2011, Charles Snelling wrote a remarkable essay about his life and Adrienne's condition. You can see it here.)