(03/18/2009) “Dancing at the River’s Edge” is all about one particular physician-patient interaction in the diagnosis and management of a
Michael D. Lockshin, M.D. |
complex chronic disease (mixed connective tissue autoimmune disease) so rare and fickle that most of the treatment decisions are problematic, depending heavily on seasoned clinical judgment.
Their medical relationship is closely followed over 25 years, and much happens outside it, but they stay together, work out many profound complexities, and both profit from the experience. The devil is in the details recorded in this close analysis of the medical facts and management, written in alternate chapters from two points of view by the doctor, Michael D. Lockshin, and the patient, the writer Alida Brill (referred to as AB in the book).
We watch these two prisoners of the knowledge that human beings are never entirely rational in their medical decision-making and therefore need open-minded conversation to weigh all elements appropriately. Both write well and, despite abundant detail, this, the longest case report I have ever read, is never boring.
This is Ms. Brill’s story, her pilgrimage toward the self-knowledge required to bear, gracefully, a lifelong incurable illness that comes and goes. There are ecstatic moments of “remission,” feeling normal, which tempt the illusion that health is possible. Then sudden devastating “flares,” wipeouts that cause total body collapse.
From her teens to near 30, she could not face the reality that her disease would never go away completely. After finally accepting that fate, she had to fight the extremely well-publicized “mind-body” movement of alternative medicine, which encouraged patients to blame themselves for their diseases in order to cure themselves. For years she believed her disease was somehow her fault and sought inappropriate self-flagellating rationalizations to prove it, a common error. Great relief came simply from realizing it wasn’t her fault, it was just unfair.
Dr. Lockshin is extraordinarily well informed, a respected scientist and recognized expert in his field. Yet he is a profoundly Hippocratic doctor with a principled facility for human interaction shaped by an educated restraint. He has the ability to hypothesize and sketch his patient’s future course even as he knows it is unknowable. He allows enough time to be an imaginative listener, although we are not told specifically how much.
His goal is to forge an alliance based on trust: “AB will tell me what I need to know and she will trust my advice, but we will always decide together after thorough airing of risks and benefits. Although she realizes I have the upper hand, we pretend equality, while I try mightily to keep arrogance at bay.” This leads to the goal: true conversation. Technically astute, Dr. Lockshin’s primary focus is always practical, what can be done to relieve suffering today.
Along the way, Ms. Brill experienced abuses of medical power, and survived them. She also learned how to live in the regulated monastery of her disease, with its appointments, tests, waiting for test results, needles, hospitalizations, rules, and restrictions. These created in her mind an “isolation” that is ameliorated by the collaboration and conversation with her doctor but never entirely eradicated. This critical amelioration of suffering demonstrates the ability of a doctor’s words to heal, Hippocratically as well as scientifically.
In a painful, elegiac chapter on love, romance, and marriage while suffering from a long-term chronic incurable disease, Ms. Brill learns her “toughest lesson”: that the loss of husbandly love, even the hope of ever being loved, is a tragic fact, often delayed but inevitable. She fights this knowledge by equating love with dependency on a man, and then rejects that weakness in favor of relying solely on herself.
For evidence of spousal perfidy she brings in her “friend and mentor,” the late Sam Bloom, and his book “The Word as Scalpel.” Ms. Brill refers to the text as an example of a doctor’s ability to “cut” a patient just as deeply as a scalpel simply by using the wrong words. She then extends the metaphor, “so too can a spouse’s words cut into the soul of the chronically ill,” and tells the story of her betrayal.
But Bloom’s title was a quotation from the physiologist L.J. Henderson, “A doctor can damage a patient as much with a misplaced word as with a slip of the scalpel,” which referred only to unintended, not deliberate, actions. Moreover, Bloom’s main point was to hope that today’s physicians achieve that rich communication wherein their words are so value-laden with science and humanity that they can heal as directly as the guided scalpel cuts.
Alida Brill |
Dr. Lockshin is a shining example of Bloom’s ideal. Instead of making that connection, Ms. Brill misinterprets Bloom in an attempt to get even with her husband. The reader understands the scorn, which later in the book she seems to mitigate.
I believe Sam Bloom would have loved this book and Dr. Lockshin’s words, but he also would have been the first to point out that the physician’s position in society is determined by the society he serves. That today’s health care has shifted from a social service to an industrialized product. Managed care has overwhelmed human relations. Innovative programs to counteract this tendency are, unfortunately, “puny” compared with the massive structural pressures (like 15-minute office visits) surrounding the medical profession.
The sociologist Bloom goes on to accept blame: “Medical sociology has abandoned its mission to alert the public to that failure.” This book, by showing what is radiantly possible, demonstrates tragically what we are losing.
Dr. Lockshin devotes much effort to the concept of Mayan time, ostensibly to help a patient’s understanding of disease, though it is not part of any medical tradition. It does express Dr. Lockshin’s exceptionalism, however, highlighted by “I do not think of myself as part of a larger class”: There is just the patient — “you” — and “me” in a private struggle. He presents himself as “sui generis,” as though he had no training in a medical tradition that shaped his methodology. What about Hippocrates? The First Aphorism tells the doctor’s story.
Life is short
And the Art long,
And the right Time but an instant,
And the Trial precarious
And the Crisis most grievous.
Hippocrates adds, “It is necessary for the physician to provide not only for the needed treatment, but to provide for the sick man himself, and for those beside him, and for his outside affairs.”
Two thousand five hundred years ago on the tiny island of Cos in the Greek archipelago, the first real doctor understood the gravity of the medical encounter succinctly stated in the first line. The Greek word for art was “techne,” also meaning skill, craft, science, what we can learn and know. Here time is short, we can learn all our lives but our knowledge may still not be enough (though with the new molecular biology this may be changing). The medical decision is often made under the pressure of time; one day, one hour, sometimes one instant too soon or too late and all is lost.
And after deciding, the “Trial,” which means the treatment, is filled with waiting and uncertainty. And after that comes the “Crisis”: Will the outcome be determined by the doctor’s techne or by fate? Here the doctor holds the patient’s hand. Perhaps without realizing it, Dr. Lockshin is solidly in the Hippocratic tradition, as is all great medicine.
How does Ms. Brill end her story? Today there are more women than men in medical school so it was not surprising that in a recent hospitalization she was surrounded by women physicians, many of whom knew her work in the field of women’s rights. Some were already admirers, some Googled her. She suddenly realized that her tragic life had taken on new meaning. She had created something valuable to others out of her suffering. She was not just a passive victim.
There is enough satisfaction in that realization to keep her going forward, and the reader is anxious to see what comes next.
“Dancing at the River’s Edge”
Alida Brill and Michael D. Lockshin, M.D.
Schaffner Press, $23.95
Alida Brill had a house in East Hampton for many years. She is the author of “Nobody’s Business: The Paradoxes of Privacy” and “A Rising Public Voice: Women in Politics Worldwide.”
Jay I. Meltzer, M.D., is clinical professor of medicine emeritus at the Columbia College of Physicians and Surgeons. A part-time resident of Water Mill, he has taught medical ethics for 25 years.