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Submitting to Autonomy

From the Mayo Clinic, Rochester, MN.

Address reprint requests to David P. Steensma, MD, Mayo Clinic, 200 First St SW, Rochester, MN 55905; email steensma.david@ mayo.edu.

THE CRATER IN HER flesh was huge, and I desperately sought the words that would convince her to have it fixed.

She was 62 years old, a black woman from an inner-city neighborhood just a few blocks from the medical school I had attended. Four years before our meeting, she felt a lump in her breast and saw a physician. A mammogram was performed, and breast cancer was suspected. But she didn’t want a biopsy, and she certainly didn’t want surgery—in fact, she didn’t want to have anything at all to do with conventional medicine. She regretted having submitted to the mammogram. For 4 years she treated herself with a cornucopia of herbs, poultices, and other unproven concoctions; the list she kept of her treatments filled two sheets with single-spaced type, and the cost was enough to give pause to even a Herceptin-hardened oncologist. Despite these ministrations, her breast cancer developed into a large, necrotic, fungating ulcer. Finally, the odor from her tumor became so offensive that her family begged her to see a doctor. The doctor whom she chose suggested something anathema to her—a so-called toilet mastectomy—so she came to the well-known clinic where I work for a second opinion. A colleague in the Breast Clinic saw her and sent her right to the hospital.

I was on the oncology ward to receive her when she arrived. My colleague’s warning ("a neglected breast cancer and a truckload of denial") didn’t prepare me for what I was to find: an articulate, well-dressed, soft-spoken woman with a dark secret underneath her blouse and a world view utterly foreign to me. The breast itself was even worse than I expected: a gigantic, purulent, draining crater extending down nearly to her chest wall, surrounded by an eruption of necrotic, fleshy pillars and a warm, scarlet rind. She immediately made clear to me her belief that the reason her breast cancer had grown so large was that she wasn’t diligent enough with her alternative medicine regimen: she hadn’t used the right type of coffee in her poultices, the dose of her black walnut extract hadn’t been high enough, and so on. She didn’t want surgery—"a hatchet job"—because her body simply wasn’t ready for it. Her "blood was too low," she needed her fluids and vitamin levels built up, she just needed more time to find the "magic poultice" that would "dry up the crater"—her exact words.

I heard myself slipping into what sounded like a sales pitch. While reassuring her with my favorite metaphor for patient autonomy (she was the captain of the ship and I was only the navigator), I forecast rocky shoals ahead if she held her current course. Only a mastectomy could possibly allow long-term control of infection and odor and permit adequate hygiene. Without the mastectomy, the tumor would eat into her chest wall, or she might die of infection. I promised her that I could give her a blood transfusion (although she was only mildly anemic) and some intravenous salt solution (although her electrolytes were normal) to "build her up" for surgery, if only she would agree to go through with it. I promised to call the most sensitive surgeon I knew for an immediate consultation.

Although she remained polite, her distrust of me and what I was suggesting was palpable. I tried to make her more at ease with me by telling her about my training in her neighborhood, in a hospital that I knew was respected by the local community. I recalled some of the parks and neighborhoods that we both knew, a large festival we had both attended. But this thin veneer of familiarity didn’t change the raw facts: she and I were looking at her problem from two completely different perspectives, and the chasm was wider than simply doctor versus patient. I was 30 years younger than she was, a small-town white man to her urban black woman. My education was private-school, conventional, and science-based; she had been taught the facts of life on tough streets and in an overburdened inner-city public school. My worldview is colored by a childhood in a conservative Dutch Calvinist sect, her beliefs were tempered by consultations with a shaman and the messages of Louis Farrakhan’s Nation of Islam. Worst of all, I realized, I was desperately trying to convince this woman to allow a surgeon to cut off her breast—a sensitive discussion even in the best of circumstances. But although I have managed to bridge all of these of gaps before with other patients, I could not break through her layers of distrust. She left the hospital without having the surgery and was lost to follow-up.

Why did her departure seem like a personal rejection? When she walked off the ward, I felt like a house-to-house salesman reeling from a door slammed in my face. My introduction to the other face of the Janus of patient autonomy was rude indeed.

The experience taught me that autonomy must be much more than simply intellectual assent to a universal right to self-determination. Real autonomy involves more than paying lip service to what one wag summarized as "every American’s God-given right to do something stupid." True patient autonomy also includes the visceral realization of the treating physician that the patient’s decisions are acceptable and a willingness to hand over most of the control of medical decision making to the people to whom the choices matter the most: those who can’t go home at the end of the day and leave the consequences in the clinic.

One of the hallmarks of genuine autonomy is the Oslerian equanimity¹ that keeps a physician on an even keel when a patient with a curable tumor turns to shark cartilage and reflexology. It is easy to stand on the pulpit of the principles of medical ethics and preach the abstraction that every competent human being has a right to direct his or her own health care. But it’s another thing entirely to sit at the bedside as a patient advocate and actually watch them do it, as anyone who has observed an exsanguinating Jehovah’s Witness can attest. Reinhold Niebuhr’s "Serenity Prayer," in danger of becoming cliché, remains a powerful appeal for wisdom and strength in such situations: God, give us the grace to accept with serenity the things that cannot be changed, courage to change the things which should be changed, and the wisdom to distinguish the one from the other.²

As a medical student, I once spent several weeks working with a charismatic young surgical resident who brashly told me he could convince any patient to do anything he thought appropriate. (Sometimes I wish I still had him to call on in cases where I feel like I am arguing in circles.) The surgeon bragged to me on our first morning together, "You just watch me in action, Steensma. I can talk any patient into any code status I want, and I can convince anyone to have or not have any procedure or test. The magic is not in what you say—most patients don’t really know what they want anyway—but in how you phrase it." Over the 3 weeks we worked together, he certainly lived up to his promise. But his combination of pseudo-authoritative sophistry, Rasputin-style hypnosis, and wearisome cajoling were techniques that made his patients’ autonomy a farce. Intellectually, he may have believed in the principle of autonomy, but in practice he simply could not give up any of the control of making medical decisions.

In reality, even if I had been able to convince my patient to go through with a mastectomy, her outcome probably wouldn’t have been that great. It is important to avoid the temptation to oversell the benefits of scientifically based Western medicine, which might have offered my patient a few extra weeks of life and a less offensive odor, but not much else. Instead of feeling rejected and making my patient aware of my feelings, I could have simply told her that I accepted her decision, even though it was one I personally didn’t like. That might have at least left the door open for future care as other needs arose.

We need to explain treatment options in the patient’s own terms and then accept their care decisions, even if the decision is something we ourselves would never consider. Of course, we must also assure ourselves that the patient is in fact capable of making a decision—my patient underwent brain imaging and a careful examination of her mental state—and sometimes that assessment can be a very difficult one to make. But incompetence and irrationality are only neighbors, not bedfellows. What seems like irrationality to me may be someone else’s deeply held, culturally influenced belief. As hard as it is to stomach for those of us who feel strongly the calling to be a patient advocate, it must be acceptable in a free society for competent adults with curable cancers to die because they choose to refuse treatment.

Sir William Osler once offered advice relevant to those afraid of the loss of control inherent in submitting to genuine patient autonomy: Things cannot always go your way. Learn to accept in silence the... aggravations. Cultivate the gift of taciturnity and consume your own smoke with an extra draught of hard work, so that those about you may not be annoyed with the dust and soot of your complaints.³

To do so is part and parcel of the art of oncology—and the art of life.

NOTES

Herceptin is the registered trademark for trastuzumab (Genentech Inc, South San Francisco, CA).

REFERENCES

1. Osler W: Aequanimitas, with other addresses to medical students, nurses, and practitioners of medicine. Philadelphia, PA, Blakiston’s, 1922

2. Niebuhr R: Written for a service in the Congregational Church of Heath, Massachusetts, 1934, and later circulated in publications of the Federated Council of Churches.

3. Cushing H: The Life of Sir William Osler, vol 1. Oxford, England, Clarendon Press, 1925, p 619

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